Accepting New Ways of Living with Long Covid

The guy in the kayak

Back, pre-Long COVID, our family would go every year to the same lake for a week to camp for our Summer holiday. The last time we were there we saw a man leave in the morning in a kayak pulling an older gentleman behind him in a tube. We spent the day playing in the water, canoeing to Butterfly Beach, paddle boarding to the various islands and tromping around as explorers looking for the perfect rocks to eat our lunch. At the end of the day, I swam around one of the islands while the fellas paddle boarded. It was late in the day, as the shadows were growing long over the lake and everyone else had already headed back to their sites, when we saw the same man in the kayak come back towing the older gentleman behind him in a tube. Our guess was that he’d kayaked the rim of the lake. The man he’d been towing was older but not so old he couldn’t have kayaked because of age. We wondered about the situation. It’s one that has stayed with me because it felt important. The energy between them was quiet, but significant. 

I’d always seen myself as the guy in the kayak. He’s the person I connected with. That would be the role I would have. When this memory came to mind today, it was different. I was no longer the guy in the kayak, I was the person being pulled. That may be what adventures look like for me now. When I got ill, I always thought I’d die or I’d fully recover. This in-between world was not one that even entered my thoughts. I’d been so healthy before COVID. Adventures like the ones at the lake were regular for me, intentionally so. 

I appreciated life and I understood its preciousness. I wanted to have experiences, as many as possible, and share experiences with Kendall and my kids. Everything from running mud races with my then 7 year old, to eating chocolate cake in bed in the middle of the night by candle light during a huge storm when all the electricity went out, playing games together, teaching my kids, cooking and baking together and going to baseball games. I wanted to experience life together, every delicious part of it I could. This life is so fleeting and for whatever reason I grasped that even as a child. 

I’d always seen myself as the guy in the kayak. He’s the person I connected with.

My life has been oriented toward health, connection and diving in. I didn’t want to hold back. I’m grateful that I chose to live life this way. While it offered substance and meaning, it didn’t offer protection. As soon as we learned about COVID, Kendall and I knew that I was at risk. There was no rational reason as to why, especially when what was said was that it was the elderly and sick that were at risk. We just knew and we were open enough to communicate that to each other. So, we took every protective measure that we knew at the time. Weeks prior to lockdown, our family stopped going to indoor public events and began to hunker down. The problem was that no one was wearing masks and my guess is that we became ill when my son and I went to get groceries the week before lockdown. There were so many people. Lines to the back of the store. My youngest son showed symptoms first and then quickly everyone else did as well. Now, we all have health problems stemming from Long COVID. Three of the four of us are disabled. I am severely disabled. 

This morning I asked the kids if they remembered the pair at the lake. They both did. It’s interesting that of all the people we saw and have seen over the years at that lake, they are among the few that we remember. When I brought it up, they immediately understood. We are now the people in the tube. While they have experienced improvements lately, I have not. 

So they said to me, “Mama, we’ll pull you in the tube behind us. Would you like that?” “Yes, I would,” is the answer I gave and it’s true. I like that we would be together and that they would be so generous and loving. Yet, there is a more complicated answer, one I kept to myself, but that my husband would have immediately had. No, I would hate that. He would probably think back to our honeymoon when we got into a fight in our tandem kayak. He wanted to be chivalrous and in control by telling me to sit back and relax while he paddled. There was no way in hell that I was going to sit back and relax while he paddled. He could do that if he wanted. This was my idea and I was going to paddle. I still want to paddle. I love doing things. I love being active and having experiences. I’ve never been one to want to just watch, I’ve always wanted to do and to do as much as I can because I just love it in my soul.

The reality is that now it tires me just to be awake. After a day of being towed I would be just as exhausted, if not more than the person paddling. Doing looks so different for me now. Living life looks different. A full recovery is becoming less and less likely. Severe disability or death are more likely final outcomes from this illness. I still struggle to get my mind around that. We’ve been holding on for an answer that we hope is just around the next corner. I keep researching, learning and trying everything I can, but nothing is working. The numbers on my labs have remained unchanged for 3 years. 

This is a quote that has resonated with me, “Grief is a shape-shifter and varies in intensity and form as it winds its way through a person. It can come out as anger, bitterness, jealousy, self-loathing, tears from nowhere, or a desperation to find another, alternative prognosis. …All of this is grief, and it’s our way of coming to terms with the truth.” That is where I have been, in grief for years and the grief will continue as I come to terms with all that I have already lost and the loss that continues. I have become a watcher and I’m so glad for all the doing I did. I hope I get to do more again. However, within the body I have, I’m learning a new way of being. There is no part of me that likes this experience of life better, but I do like the people this experience has revealed each of us to be. I like the depth of connection it has brought between me and my family and me and a few friends. Suffering reveals aspects of ourselves that can be hidden in other times.

I will keep trying for as long as I can.

• Topics:
• Long Covid