Finding the Hero in Each of Us During the COVID-19 Pandemic

On a day of quiet contemplation and prayer, the shrill ring of the telephone on Easter Monday was a bullet I never saw coming. What I’d feared most about this pandemic had come true. My grandmother — vibrant, charismatic and with the ferocity of a gladiator — had passed away.

I can’t even imagine what one calls it when they’re already down to the bone and knows they can’t be cut any deeper. Somehow, I had to find a way to stitch myself together and try not to crumble with the force of mourning a kindred spirit; someone who understood the hardship of living with physical limitations because she, too, was disabled. She knew what it was like to grieve the loss of one freedom after another, until it feels like there’s so little hope left to hold onto. To be able to pick up the pieces, to muster the strength to fight despite the most challenging of circumstances was the type of grit we both shared.

Earlier that month, the sight of my barren fridge and empty kitchen cupboards was an assault of the inconceivable, starvation as real a threat as my chronically ailing body and the looming peril of death by pandemic outside my front door. As the days hurtled by, I watched as my weight plummeted from the triple digits into the dismal double digits against a backdrop of soaring costs I could ill afford as someone perpetually unemployed due to chronic illness that spiraled into disability.

I’ve danced at the very boundaries of life, teetered at the edge of breathing and breathless, scraped out joy amidst a young adulthood mired with oblique, subtle cruelties and traded one exploitation for another all for a simple label that marked me as vulnerable.

I weigh all the moments that came before against the crisis we’re all facing now.

There are some who have never had to choose — between pride and safety, want and need, bad and worse — who have never had to tailor the definition of dignity around the reality of survival.

I have never had that luxury.

This knotted, barbed wire — this quiet war of a virus that spans continents and cultures — this is a window into the life of chronically ill and disabled people. We have long been hobbled by a truth the rest of the world is now discovering — that health and economic well-being are inextricably linked, for better or worse.

Entire nations have been grounded, locked down, fenced in. Even with miles of open space, it’s hard not to feel suffocated by restrictions, to eagerly await the return to normalcy. But for millions of people with chronic illness and disability, living with permanent restrictions is our normal. For many of us, being housebound for the majority of the time is a by-product of flaring health symptoms or physical limitations that make it challenging to access public spaces.

The global economy has stuttered to a halt, with businesses shuttered, jobs lost, and individuals and families desperately struggling to make ends meet through no fault of their own. Not laziness, not lack of ambition, not even a desire not to work at all. Staying at home unable to earn an income of their own is not a vacation but a constant source of stress and frustration, much like it is for millions of chronically ill and disabled people who — for reasons completely outside their control — are unable to work, but wish with every fiber of their being that they, too, could be part of the workforce and be financially independent.

What’s left in countries with enough resources and compassionate government leaders is relying on programs that help some, but leave others falling through the cracks — a mirror image of the social assistance programs for chronically ill and disabled people. Applying for these programs is not a reflection of someone’s character, their intelligence, or their value to society. It is simply a bulwark against homelessness and starvation.

While worldwide financial stability is jeopardized to protect public health, our frontline workers endanger their lives every time they’re forced to work without the personal protective equipment needed to safeguard their health. This is an atrocity as egregious as denying the accommodations chronically ill and disabled people need to preserve their remaining health and contribute to society. Sacrificing health is not a price anyone should be asked to pay. Everyone deserves to have a quality of life unhampered by illness and disease.

When illness strikes, it’s not with a single ripple, borne solely by the individual, but is shouldered by those who carry the weight of caregiving — healthcare professionals and loved ones alike. True heroes, never faltering, never breaking, never showing signs of doubt. But no one else sees the darkest moments play out in the privacy of home or in the corners of the hospital, where worries are purged and nightmares turn to flesh. There is nothing more heartbreaking than having a ringside seat to someone else’s struggles, helpless to do anything but stand with them in solidarity.

In these uncertain times, we are all struggling in some way, whether we wear it on our skin or hide it deep inside. Now, more than ever, this virus, this usurper to all that we hold dear, is as much our enemy as is hate. This is humanity’s clarion call to take up arms, to shed every narcissistic trapping that bolsters divisive behavior, strengthens the cynic and pummels the hopeful. To claim the mantle of heroism at the heart of each one of us, crowned with every courage-fuelled act of kindness.

We are knighted far from public arenas, in the absence of applause and acclamations, where our mettle bleeds true. When kindness is our guide and words are catapulted into action — by feeding the hungry, caring for the sick, comforting the dying, protecting the vulnerable, and creating safe and accessible workplaces — heroes are forged and hope blooms anew.

For more on the coronavirus, check out the following stories from our community:

• The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19
• If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me
• How America’s COVID-19 Response Is Exposing Systemic Ableism
• Search for COVID-19 Treatment Leads to Chronic Illness Medication Shortages