Chronic Pain Prepared Me for the Pandemic
Pain, illness, and disability are not marginal to being human, but central.
Posted November 17, 2020
This guest post is by Liuan Huska.
Thanks to COVID-19, we all know what it is like to ration face-to-face social interaction, adjust to an ever-changing “new normal,” and reach the end of our medical and technical abilities. Now, as we stare down a pandemic winter, many of us are living with limits we could never have imagined. Some of us are realizing for the first time that others have lived this reality all along.
I know limits because of chronic pain. One summer exactly a decade ago, a mysterious ache in my left ankle spread up my body and plunged me into years of pain and depression. Freshly graduated from my liberal arts Christian college, I watched my friends go salsa dancing, move to foreign countries, and take bicycle trips while I wondered whether I would be able to walk a couple of blocks on any given day.
I was plunged into the parallel universe of people with illnesses and disabilities, who, though they share the same planet, experience social life and human institutions completely differently. In the strange alchemy of history, however, these separate worlds have merged, if only for a short while.
“Welcome to our world,” some with disabilities have said. I would add, “Welcome to the real world.” For though "abled" and "disabled" are seen as separate boxes, our ability and health are really a spectrum along which all of us move throughout our lives. Some of us spend more time on one end than the other.
Though we’ve structured our institutions assuming that able-bodied productivity is the default, the limits and vulnerability we know in ill health and disability tell a truer story about the human condition. We all get sick. We will all have to rely on others. None of us, quips theologian Stanley Hauerwas, will get out of life alive.
One in four adults in the United States lives with a disability, while about 12 percent of Americans are limited in their usual activities due to one or more chronic health conditions. And many more are joining this group as post-COVID long-haulers. Those of us with disabilities and chronic illnesses have lived much of our existence on the margins of society and religious life (how many people in wheelchairs or walkers do you see on a stage or pulpit?).
Yet, our experiences are not marginal to being a human; they are central. What we’ve learned as we’ve worked to make meaning and live fully within limitations can be a well of wisdom in a society struggling to find a way forward amid pandemic, climate crisis, and social upheaval.
There is no normal.
“It’ll only be a couple of weeks,” I thought when my pain first started. Isn’t that what many of us said in March when the first COVID-19 shutdowns happened? Now here we are, wondering how long this will drag on, yearning for our pre-pandemic life.
It took me over two years to let go of the expectation that my pain would go away completely, and I would get “back to normal.” But when I did, I was finally able to get creative with my new reality and enjoy what was in front of me. I couldn’t hike, but I could take a canoe trip. Instead of dancing, I gardened.
There are some weeks when the pain flares up, and I have to cut back on all activity. I remind myself that nothing stays the same. Which doesn’t mean I will go back to normal—because “normal” assumes a static, unchanging reality. But my body will change. I will adapt. I will find different resources and therapies and have new experiences that will change how I cope with the pain.
If we can let go of the need to “go back” to pre-pandemic life, we will become more agile—emotionally, spiritually, and socially—at navigating our changing realities and working with the possibilities within them.
Medicine won’t save us.
“I can’t wait for the vaccine.” I’ve heard this refrain so much in personal conversations, and I, too, long for a way to plug the tidal wave of disruption, death, and grief. But, like my chronic pain, there has been no silver bullet for COVID-19. Thanks to the collaboration of scientists, health care workers, and public health experts, we’ve implemented effective strategies and treatments to decrease the death rate. But none of these is a cure.
At some point, likely later rather than sooner, we will have a vaccine. But hinging our hopes on a quick fix is like giving Ibuprofen to someone with fibromyalgia. It may ease the pain temporarily, but it hides the fact that our problems come from a deeper source.
COVID-19 has killed twice as many African American people as white people. Undocumented immigrants hesitate to seek testing and treatment, fearing run-ins with authorities. Millions lack health coverage and can’t access the care they need. Mask-wearing has become a bone of contention, highlighting fracture lines within communities and families.
While we seek the benefits that medicine and science offer, we can’t ignore the other parts of our life together that need healing, the kind that can’t be addressed through technical expertise. This healing, instead, requires deep listening, seeing the humanity of others who are different or disagree, and building bridges across our many dividing lines. Doing these things won’t take the pain away, but we’ll know a deeper, more lasting well-being.
We are more than what we produce.
In the second quarter of 2020, the U.S. GDP experienced its steepest drop on record of 9.1 percent. Unemployment reached an all-time high of 14.7 percent in April. Even now, our economy is floundering. Yet amid the very real dangers of job loss, hunger, and housing insecurity (especially among the working class), there is also an opportunity.
We live in a production-oriented society, which pegs our value on what we produce. Some will say that if you’re not working or actively trying to find a job, you don’t “deserve” government aid, or health insurance, or even charity. Such logic ignores our shared vulnerability—the fact that chronic conditions or lack of opportunity or even a pandemic can keep any one of us working. No one is immune. But we’d rather barrel forward with the illusion that we’ve invulnerable—that with the right combination of grit and ingenuity, we can evade those unfortunate situations that befall others.
Can we instead stop and admit that we are just like everyone else?
In the stillness, when I take a breath and pause from the relentless pace of childcare, housework, and writing, the little whispers come: You could get sick, too. You could stop being able to cook and clean and take care of yourself and your family. Remember when you were in so much pain that you could barely function? Can you live through that again? Your husband could lose his job. What will you do then?
I take another breath and respond: I am not what I do. My life amounts to more than my (meager) income, the articles I’ve written, or my not-so-clean house. It’s OK to take breaks or even stop for a while. It’s OK to admit when I’m not OK, because then I reach out to others. I am woven into a net of love and relationships that I didn’t earn but belong to because I’m human.
The pandemic is a window of opportunity to step into a different kind of economics for those who will take it. Theologian Nathan Stucky lays out the bones of this sacred economy as described in the Hebrew scriptures, comparing it to the Egyptian economy the Israelites escaped from:
“Remember that there was a time when your worth was reduced to your productivity. Remember the crushing oppression of a society and economy that refuses to stop. Remember when you disproportionately bore the vulnerability of a society.
Refuse to become that. Stop. Rest. Let sabbath point you simultaneously to God and neighbor.”
Maybe you’ve never disproportionately borne the vulnerability of society, but these days, we have clear views to those who do: meatpackers struggling with COVID outbreaks, essential workers delivering our packages and putting together our take-out meals, risking infection, cashiers behind plexiglass windows, farmworkers with fingers cracked and stained from produce picking, breathing in pesticides.
As the pandemic halts our business-as-usual, we have a chance to learn new ways of being. In my own years of pain, I was forced to dig beneath my accomplishments and abilities (which were no longer reliable) to a deeper source of self-worth. Can we find that deeper source today, in ourselves and in others? Can we care for our neighbors that we have depended on even when they can’t produce? Can we stop and look, refusing to avert our eyes from the pain—collective and individual?
Let’s not go back to normal. Let’s find a better—more human—way forward.
About the Author: Liuan Huska is the author of the forthcoming title Hurting Yet Whole. She is a freelance writer who has written for publications such as Church Health Reader, In Touch Magazine, CT Women, Sojourners, and Hyphen Magazine. She lives in West Chicago, Illinois, with her husband, Matthew, and their children.