Never Fearing Wild Things

Three and half years ago, in the first week of March 2020, I was in Old Havana, Cuba, with my daughters. We were there because my older daughter was presenting a paper at an international conference at the University. We had been assured that travel was safe. This new coronavirus wasn’t yet in Cuba.

As we now know, it was. It was there with the many travellers from Italy, Spain, Germany and the UK who lived in the same hotel, went up and down the same small elevators as we did. So it wasn’t a big surprise that we went home, on the same day the WHO called the pandemic, sick with Covid-19.

The symptoms I had in Havana were not what they were telling us were part of the virus, so I dismissed them as something other. The digestive issues (I was travelling after all) and the strange and intense muscle pain left me curious, but not worried. Then, two days after our return came the terrible headache. It passed a day later and I thought I was fine.

My daughters were sick, with a whole variety of symptoms. Perhaps we had Covid, but we weren’t eligible for testing so we wouldn’t be able to know for sure. For myself, the symptoms came in waves. A few days after the crippling headache I woke in the middle of the night with a sore throat unlike anything I’ve ever experienced. It felt like a spiked, hot metal ball had been lodged in my throat. Through tears I swallowed an Advil (we hadn’t been told yet not to) and went back to sleep. I woke the next morning, sore throat gone, replaced by fever and a heaviness in my chest that would linger and evolve into a cough.

My younger daughter’s fever would have her hallucinating the carpet was breathing. And we moved from bed to couch doing little more. Watching TV or reading took energy and focus we did not have. I spent hours laying on my bed, staring at the ceiling.

We were sick for most of three weeks. When it seemed to be over I threw myself into the new world of adjusting to lockdown – personally and professionally. The challenge didn’t scare me.

About six weeks after our apparent recovery from Covid, I found myself struggling with fatigue. I’d be sitting in a meeting (appropriately distanced and masked now) and my thoughts would start to muddle, then my words would disappear. I would come to describe it as a machine powering off. I could feel my brain slowly going offline. I’d excuse myself, embarrassed.

I called my family doctor. She told me to treat it like a concussion and get rest when I felt I needed rest. I left early for holidays, which wasn’t difficult as much of life was shut down. And I slept. I’d be awake for a couple of hours and then I’d nap. I’d wake for lunch and a bit and then sleep. I’d get up for dinner and a short evening before going back to bed. I did this for a few weeks and started to feel a bit more normal.

I would repeat this pattern for months and then for three years. In the midst of it I would take time away from work, the longest a three month leave of absence under the guise of “stress leave” because no one wanted to name what I was experiencing as “Long-Covid” or as it is now called, “Post Acute Sequelae Covid (PASC)”

The story is long and there are many, far too many, who don’t believe it. I intend to tell it. For myself, but more importantly for my daughter whose experience has been more debilitating than mine. Maybe, some day, someone will hear and believe and be able to help her. That is my hope.