Cranial Nerves and the Ongoing Post-COVID Journey

It’s been 21 months since my initial bout with COVID. I’m still not 100% recovered, maybe 80%? It’s hard to recall what “normal” looked like; I sometimes remember charging forth into every day with deep wells of ambition, staying up late into the night writing or working on a project, leading meetings, spending so much of the day thinking… it all seems so full, and fast-paced, and impossible now, still.

So, I’m not really sure how close I am to how I used to be anymore.

What I do know is that I am slowly getting better, still. Yesterday, I went to a physical therapist for the first time. She spent 90 minutes with me, sharing about the cranial nerve and patterns doctors who deal in dizziness are seeing in post-COVID patients. She talked about the brain stem and the neck and walked through the many and varied wonky symptoms I’ve experienced in the last nearly two years, stuff I never experienced previously. 

I wept some, because I do that now in response to pretty much anything but especially when I feel grateful. I’m grateful to have access to doctors who take COVID and post-COVID issues seriously. Grateful to be heard and understood and validated. Grateful for inklings of answers. Grateful for pathways forward. 

The exercise she gave me involves shaking my head yes and no for one minute each, focusing on a spot on the wall during that time. I did this yesterday once. “Do this twice a day, at 80 bpm, until this seems stupidly easy, and then slowly increase to 120 bpm. Don’t push it,” she warned, “We don’t want you to trigger another 45-day headache.”

Shaking your head yes or no shouldn’t be an issue, but the truth is I’ve carried my head around nervously for the last year and a half, careful to keep steady and avoid the destabilizing feeling of being on a boat when I’m not. I shouldn’t have to think about how to shake my head, or if to. Sometimes I feel like I move like my 80+ year-old grandmother, I move so tentatively. That isn’t normal, right?

Neurological healing and recovery takes a long time. I don’t have brain fog anymore, most of the time. I don’t need to nap every single day, just every few days, especially if I’ve been active, talking to people for several hours in a row and also walking. Performing any complex activity that involves using multiple senses and areas of my brain simultaneously still wears me out in ways it never did before, provoking headaches and brain fog. My brain doesn’t get as exhausted as it did last year, when trying to run a strategy session sunk me into massive and weeks-long migraines. The headaches are smaller now, warning signals from my sweet, terrified brain to take a break and rest. 

So that is what I try to do. 

Neurological issues and autonomic nervous system disorders are private struggles. There’s no cast or crutch or cane that signals, I’m still quite sick actually. I am grateful that I seem to be recovering, the wells of energy seem to stay full longer, and my physical endurance is improving. I even went back to the gym this week. I even did yoga a couple of weeks ago. 

But my brain is not done healing. Waking up this morning with a pounding headache and that slow brain feeling was discouraging. I overdid it yesterday, what with all of the nodding yes and no, the driving, the evening holiday gathering. Today, I will have to make up for that energy deficit and give my brain some more space to rest, again.

I share all of this because there are still so many people who don’t believe that COVID can hurt them, at least not seriously, and yet here I am. No pre-existing conditions. No history of migraines. Just an adrenal hormone imbalance and 21 months of ongoing and varied symptoms that disrupt my daily existence. COVID can be life altering.

The reality is that there is still so much unknown about why some people who are 40 years old get COVID and have no symptoms and other 40-year-old people get COVID and die, or why people in between, who maybe had no initial symptoms develop neurological issues that last for months, or maybe a lifetime, who knows? No one knows. We won’t know for a long time, until scientists and doctors can conduct studies and analyze data and publish reports. We’re only able to operate on emerging trends, hunches, and patterns people are seeing in a whole host of people, the young and the old, the weak and the strong.

Maybe someday we’ll know and be able to say, you with this blood type, you with this DNA, you with this specific combination of tendencies, you need to be more careful. You are more susceptible to the long-term damage COVID inflicts. But no one knows. You could be sick for days. Or weeks. Or months. Or years. Or die. Or not be sick at all. No one knows.

So how now shall we live?

This is a strange space in which to operate, because I love the life I have now, but it is not the life I had pre-COVID. You can grieve the life you lost and also be grateful for the life you gained. You can hold both truths in your hands. Isn’t that the reality of loss, no matter what it is you’ve lost? I miss the team I led. I miss being a leader and a problem solver, a strategist and a creative thinker. I miss this part of me, the part that is handicapped now by damaged nerve endings, the part I am aware may never be fully restored.

But I also love the life I have now and am grateful for the space and flexibility to rest, to write, to cook, to walk, to be with my family, to observe the natural world around me, to appreciate silence and slowness, to dwell and linger in God’s peace and quiet, to revel in it in ways the busy life I led before did not permit. There’s so much space, here, now.

I think this is what we are called to do, to go on living in the capacity that we are given, even if your world is smaller or feels insignificant. It isn’t. I am worthy and valued because I am. That’s it. No performance review or checked off list is required to validate the importance of your existence. Just being is enough. And out of that worthiness pours gratitude for every single falling snowflake, every single whispered “me too” of shared experience, every single shared smile or tear.

Don’t you just love to be alive? Isn’t it just wonderful?

Cover Photo by Dzenina Lukac from Pexels

Published by Sarah M. Wells

Sarah M. Wells is the author of The Family Bible Devotional: Stories from the Gospels to Help Kids and Parents Love God and Love Others (2022), American Honey: A Field Guide to Resisting Temptation (2021), Between the Heron and the Moss (2020), The Family Bible Devotional: Stories from the Bible to Help Kids and Parents Engage and Love Scripture (2018), Pruning Burning Bushes (2012), and a chapbook of poems, Acquiesce, winner of the 2008 Starting Gate Award through Finishing Line Press (2009). Sarah's work has been honored with four Pushcart Prize nominations, and her essays have appeared in the notable essays list in the Best American Essays 2012, 2013, 2014, 2015, 2017, and 2018. Sarah is the recipient of a 2018 Individual Excellence Award from the Ohio Arts Council. She resides in Ashland, Ohio with her husband and three children.

3 thoughts on “Cranial Nerves and the Ongoing Post-COVID Journey

  1. I absolutely love this piece. Thank you. I am so sorry covid had this effect on you. Your straight forward analysis on long covid and its specific affects on your personal health should be a message everyone needs to hear! The daily struggles. The daily triumphs. How you are dealing with yourself in such a compassionate way is so commendable. And inspiring. Thank you again.

    Liked by 1 person

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