The writer and her husband, before she was exposed to COVID.

At the Seder table: Long COVID, and dreams of the life I once led

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At the Seder table: Long COVID, and dreams of the life I once led

The writer and her husband, before she was exposed to COVID.

I believe the Seder table is the best place to gather for storytelling. We talk about our journey out of slavery and eventual freedom, ending with a rousing version of “Chad Gadya.”
When we celebrate Passover with family and friends, we share our own stories. I’d like a rewrite of my narrative for this year. My husband had major surgery. A close family member was diagnosed with cancer. A friend moved into a memory unit at age 59.
Meanwhile, I am trying to figure out how best to live with long COVID. People don’t talk about it much; they just want COVID-19 to go away. But I regret that COVID does take up space in my brain as there’s always a reminder that it is there. There’s also no real understanding of long COVID in the medical community, it seems – or treatment or diagnosis. I’ve had blood drawn and nose swabs up the wazoo and everything is good. So why do I feel so lousy?

• Is it the weight of my family situation?
• Am I overworked?
• I am older – that alone is a beehive of changes
• Maybe there is something else wrong
• Or maybe it is just COVID

Dayenu.

My pre-pandemic exposure occurred in early March of 2020. I work with the elderly, and I took a client to a medical appointment. When I picked her up at her son’s house, I waited in the living room while she gathered her things. Before we went out, she called out to her son, “Are you OK? I am leaving now.” He mumbled something in response and coughed from another room. During our day together, she mentioned that he was keeping to himself because he was worried about her catching whatever he had. She brought meals to him on a tray and left them outside his bedroom door. And by the way, he was a scientist, she proudly told me.

A few days later, I read an article in the Globe about a biotech conference in Boston. Many of the attendees were thought to have contracted SARS-CoV-2, a highly contagious virus otherwise known as COVID-19.

My client’s son worked at that company. She and I spent a lot of time in close quarters. I think she even sneezed in my car.

I started to piece things together. Did he attend the conference? I called her and asked. Yes, he went to the meeting. I told her about the article in the newspaper. She was very calm and assured me that her son was fine. I pushed a bit and asked her to find out if he had been tested for COVID. There was no COVID infrastructure at that time. There was nothing to do except quarantine. We soon learned that the biotech conference was a super-spreader. My client’s son was positive and a few days later she got sick.

During my 14-day quarantine, I felt a variety of symptoms and tried really hard to figure out if any of them pointed to an actual diagnosis. Even now, I don’t know if I had COVID. But I definitely experienced it, as did my husband. Ten months later, I got a real COVID diagnosis. I felt lousy on a snowy day in January. My first test was negative. Forty-eight hours later, I felt worse. I dragged myself to a testing site. The next day I got the call: Positive.

I didn’t work for a month. I spent two weeks in bed with barely enough energy to climb out to retrieve my meals – now left on a tray outside of my bedroom. The first time I went downstairs to rejoin the living, I was a fish out of water. I pushed myself along for the next week or so to build stamina. Eventually I went back to work. But I was different. I couldn’t shake the fatigue, headaches, joint pain, and general malaise.

Since then, I’ve had about two weeks of feeling like myself. When I got the first vaccine in April, all of my symptoms disappeared. It was a miracle. Unfortunately, the second shot came with a resurgence.
I’ve analyzed this a thousand ways. I feel like I’m sick but I’m not. I have a limited amount of energy and when I’ve used it up, there are no reserves.

Dayenu.

Friends invite me for walks. I take rainchecks. I’ve had negative COVID tests and my blood tests continue to be in normal range. I move along with my life and every four weeks I crash from exhaustion. I spend three or four days in bed – with relentless body aches – running hot and cold with no fever.

These days I can fake it until I can’t. That means that I appear energetic and on the ball. Once the fatigue sets in, I’m cooked. I have to plot out the steps I have to take just to get home from wherever I am. I sometimes question whether or not I can do it.

At this point, I have a feeling this virus (or whatever it is) is going to stay with me for a while … perhaps a long while. In the meantime, I put one foot in front of the other for those in my family who cannot. And, by the way, I am hosting 20 people at the family Seder.

Dayenu.

Carolyn Eggert writes from Newton.

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