I read hundreds of books every year. Most of them are a few dozen pages long and feature brightly colored illustrations. One of my favorites—at least from that particular literary genre—is Mo Willems’s “Goldilocks and the Three Dinosaurs.”
The story is just what you might expect. Goldilocks thinks that she has stumbled into the home of a family of bears and helps herself to their chocolate pudding, oversized chairs, and cushy beds before finally realizing her error. It isn’t a bear den, it’s the home of three enormous and ravenously hungry dinosaurs. Goldilocks flees just in the nick of time, and the book concludes with this moral: “If you ever find yourself in the wrong story, leave.”
Long-haul Covid-19 definitely feels like the wrong story. None of us would have chosen it. If we were the authors of the universe, there would be no pandemic and we would be the picture of health. Mysterious symptoms? Relapse upon relapse? Gaslighting doctors? None of them would have even made it into the first draft. And yet here we are . . . in this story. Maybe you have tried medications or supplements, a new diet or a new doctor, radical rest or regimented breathing exercises. And still, your symptoms persist; the door is bolted shut. We are in the wrong story, surrounded by dinosaurs, but how do we leave?
Our physical journey out of this story is only partially in our power. We can educate ourselves, seek out competent and compassionate medical providers, keep a health journal, and engage in the patterns and behaviors that seem to be most beneficial to our health, while avoiding those that harm us. And still, our physical health will not be entirely in our control. (It never was.)
There is another way in which we can leave this story, though—an inner journey. We leave the sob story (the one entitled “Covid-19 Has Ruined My Life”) when we notice that it is just a story—just one of many possible narratives that can be built from the same set of facts. We leave the story of woe-is-me when we stop repeating it to ourselves. We leave the story by transcending it—by picking up the pen and creating a better narrative.
To be a better story, the story we tell still needs to be grounded in the facts. These are facts for me and most of them are probably facts for you: My physical abilities are different than they were 5 months ago. I face new limitations that have changed my daily routines, my relationships, and my plans for the foreseeable future. I have not received meaningful help from doctors. I have faced the possibility of my own death multiple times and the trauma of those experiences lives in my body.
Some might wonder how a story with these facts as its starting place can possibly be shaped into a happy, heartwarming, or meaningful one. To illustrate, I’ll give you my story, as I’ve heard it reflected back to me by two very different people in my life. First, the bleaker story, from a family member, whom we will call Eeyore:
Once upon a time, there was a fit, healthy woman who was full of life and adventure. She got sick with covid, and everything fell apart. She could barely take care of herself and couldn’t take care of her kids for quite some time. Illness diminished her. She can’t run, can’t climb, and isn’t nearly as fun to be around. She’s doing better now than she was a few months ago, but her future is still very uncertain. Who knows if she will relapse again, who knows how long these symptoms will continue to impact her, and who knows if she will be able to provide for herself. She was writing a novel, but now she just writes about covid. It’s really sad.
And then there is this story, which I hear reflected back to me from my angel sister (and others near and dear to me):
Once upon a time, there was a fit, healthy woman who was full of life and adventure. She got sick with covid, and her whole world changed. Instead of lying around in the rubble, feeling sorry for herself, she picked up the pieces, got creative, and began building. She grew as a person, learning to be content with stillness, patient with her body, and present with the little miracles of daily life. She modeled resilience for her children. She became an admin of a Covid-19 support group and nourished connections with people from around the world. She saw a need and rushed in to fill it, using her writing skills to create the resources that she herself had longed for earlier in her journey. She has low moments and hard days, but they don’t define her. It’s beautiful to see how she’s adapted to and risen above a really hard situation.
Neither of these stories is false. The first one is wrong, though. It is wrong because it is wrong for me. It doesn’t inspire or empower me. It doesn’t align with my values or my sense of who I am and what matters most to me. It focuses exclusively on the closed doors and misses the open ones—misses the new and lovely things happening just on the other side of those opened doors.
Here’s the thing: If I told myself this wrong-for-me story enough, it would—bit by bit—swallow the truer and more beautiful stories. If I told myself this wrong-for-me story enough (or if I gave too much space to the people who do), I would come to believe it. In believing it, I would stop celebrating the beauty of the present moment, stop peeping my head through new doors, stop challenging myself in new ways, stop building new friendships and connections. My telling and retelling of this wrong-for-me sob story would add bolt upon bolt to the doors of the dinosaur house, trapping me inside. Telling myself an alternate, more positive, more right-for-me story also has an amplifying effect. The more that I remind myself of the ways in which I’m growing, the more inspired I am to continue that growth.
If you listen to the people in your life (or the voices in your head), you will also hear different takes on your own story. Notice which versions are true to the facts and which aren’t. Among the true-to-the-facts versions, notice which ones help you and which ones don’t. Which ones lift you up, and which ones pull you down? Which ones paint you as a victim, and which ones inspire you to be a survivor? Which stories open doors, and which stories close them? Which stories encourage ongoing revisions? Any story that deems itself beyond revision is the wrong story. Any story that denies you access to the pen is the wrong story.
Of all the stories that you could tell about your journey with long-haul Covid-19, which one inspires you to create beauty from the rubble? Which one softens the sharp edges of suffering with purpose and meaning? Building from the raw material of the present moment, which story is the right one for you?
So beautifully written Lisa, thank you. I am a long hauler from South Africa. My 1st symptoms were mid March. I am finally seeing a shimmer of a ray at the end of this dark tunnel (fingers 🤞) sending your much strength and a bright light at the end of your tunnel 🙏
Your writing always lifts me. Thank you for sharing your stories and your talents.