'I have changed': A nurse suffering long-haul COVID-19 effects looks toward Christmas

Editor's note: Alix Atwell is a nurse and aspiring writer who lives in Barrington and works in Northbrook. In the summer of 2020, she chronicled for the Daily Herald how her family of four was hit by COVID-19 months earlier. Eighteen months after her diagnosis, Atwell still suffers from long-term effects.

“On our second COVID Christmas my true love said to me, will we ever get to trimming that tree?”

I start my day making silly rhymes, deflective humor to distract from the pain and personal disappointment this season has gifted me. My whole family got COVID-19 back in 2020, before vaccines, before delta, before omicron.

But 18 months later, I still have not fully recovered. Long COVID has made 2021's holiday prep devoid of its usual pep.

A week before Christmas, our naked tree sits in the corner waiting to be dressed. I dragged the garland and ornaments from the basement a few days earlier, but that was as much as I could do. Stacked dusty boxes of precious heirloom trinkets sit unopened until I finally begin to decorate.

Two prepackaged advent calendars, ordered online back in September in fear of supply chain issues, sit where the traditional 25-doored wooden castle belongs. Oh, how I enjoyed previous Decembers hunting at local outdoor markets for miniature treasures, joyfully selected, that provided the daily anticipatory magic of the season.

Sorry, kids, not this year. This year is different.

The world has changed. I have changed. I feel it in my bones.

I head to the kitchen for a cup of tea. I whisper to the unused cookie ingredients staring back at me from the pantry, “I'll get to you next weekend.”

I lie.

The weight of the cold stone floor pushes against me, as does the stagnant air around me, a weighted blanket, getting heavier with each new sunrise. Holding me down. Keeping me down. Trapping me in my new invisible cage. My morning tea ritual, once routine, has become a painful chore.

This is long COVID. You cannot see it. What you would see is just another middle-aged woman, overweight, slow, lazy even. A complainer with nothing to complain about. Two years ago, I would have been described as fun, energetic. Youthful even. That woman has disappeared. In her place is a knockoff version, shoddy and not meant to last.

And for this counterfeit self, lockdown has never ended. She does not do anything inspiring or go anywhere of note, but for work, part-time now, and essential shopping. She is but a shell of her pre-COVID self, as drab and unadorned as the tree standing in the corner.

Through the window, skeletal branches wave to me in the wind. They too know change. But their pain is purposed and cyclical — their loss regenerative. Spring will come and new blossoms will bloom. That is not what is happening to me. This feels structural. Permanent. Prophetic. Every muscle fiber seems changed, from smooth layers of connected strength to sharp shards of barbed wire. Every contraction hurts.

Tendons and ligaments, too weakened to keep grasp, give up. Joints they once protected now struggle to maintain structure and place. Bones rub where they shouldn't, pinch what they couldn't, slowly grinding me to a halt. The ringing in my ears, a constant companion now, is but the cacophonous caroling cries of my COVID-damaged cells.

No longer do I want to get up ... for work, for a shower, for even a hot cup of tea. My mind is now continually weighing: Is it worth the pain?

But the more I rest ... the more energy is needed and the more intense the pain comes upon my inevitable rise. So, I pop Advil the way I once popped Tic Tacs, smile for my kids and patients under two masks now. Grin and grip, clench and clutch, and keep moving forward.

Long COVID has not just messed with my muscles: My mind, memory and metabolism have suffered as well. I now write down everything so as not to forget. Common chores take thrice as long. Nothing smells or tastes right, yet strangely the weight keeps piling on, making it more of a struggle against the ever-expanding forces of gravity and inertia. And as an unexpected bonus, COVID stole part of my womanhood overnight. Though I wasn't planning on having any more children, I didn't want a cold-turkey menopause, either.

I want it out! Extricated from every cell. This coronavirus is as pernicious as fake news, as stealthy as Santa Claus on Christmas Eve, and as masterful at covering its tracks as America's favorite fictional serial killer, Dexter (in the first series, of course). The medical community finally believes and accepts COVID resides and continues to wreak havoc in my body. I have ever-vanishing antibodies and persistent low oxygen levels that prove it. But it leaves no other detectable or treatable trail. No lab work, CT scan, MRI, ECHO or X-ray points the myriad doctors I've seen in the right direction. COVID taunts and teases like a maniacal gingerbread man: “You can't catch me.”

So, how do I make peace with this squatter that has moved in and continues to make messes I am too weak to clean up?

Lie down to rest? Inertia claims me. Lungs fail me.

Get up and push through? Exhaustion tames me, lessening tomorrow's expectations.

But though this virus infected, and still inhabits, my mind and body, I will not allow it to invade my spirit. I must draw the line somewhere. And so, I draw it here!

I've always hated the analogy of fighting a disease. We've all heard it. One could say my mom lost her battle to cancer, but she always said “it takes two to tango,” and she did not choose that final dance. It chose her. Our culture seems to make everything a fight: the war on drugs, the culture wars, a battle of wits.

Why, then, when I don't subscribe to that paradigm, do I still feel the struggle? Yes, my mind and body are incessantly defending its cellular borders to this microscopic invader, and possibly some rogue traitorous cells that flipped sides, but I now see the real battle I am fighting is with myself, in the ethereal plane, a place COVID does not even reside.

Why am I allowing COVID to challenge my spirit? After all, it takes two to tango.

I am not a fighter. I am a nurse, and an advocate, and — above all — my mother's daughter. I want to heal. I want to live. I want to dance! I will not let my spirit tangle with some fictitious ghost of COVID past, present or future. I will instead slip on my trusted Crocs, pull up my big girl panties, hobble over to the record player, place Tchaikovsky on the turntable and allow the spirit of Christmas, which is real, to lift me from my pain and spin me gratefully and joyfully into a promising 2022.