I'm a Chronically Ill 'Fear Expert.' Here's Why I'm Uniquely Prepared for COVID-19.
I didn’t sleep much last night. The coronavirus (COVID-19) updates that had been swirling about my news feed were now swirling around in my head. For those who don’t know, the coronavirus is a new-to-humans viral strain in the coronavirus family that affects the lungs and respiratory system.
Everywhere my mind turned, I saw disaster. I worried for my own health as a chronically ill 57-year-old and my husband’s health as an overworked small business owner. Then there was the business, itself. If we survived the virus, would we be left with nothing? And what about our sick and elderly loved ones?
This morning I went to the grocery store. It was bustling – crowded with uneasy customers scrambling to stock up ahead of the virus. When I reached the cashier, I saw she was near tears.
“I need to go home,” she muttered. “The stress, the stress – it’s too much stress.”
I understood then how universal my own fears were. This virus is a blow, and the whole world is taking it hard. And it occurred to me, too, that we – the chronically ill – know all about blows, having already endured more than most. This is not new territory for us. In fact, it may be our time to shine.
We’ve already survived a disaster. It’s not fair, I suppose, but if you’re reading this and you have a chronic condition, you already know a few things. You’ve learned the hard way about grief and loss. You’ve learned that life can be very unjust, and that its injustice will be invisible to many. Whether we like it or not, we understand the shortcomings of our medical system, the illusion of economic security, the limitations of love. We also know the value of a good friend, the beauty in a pain-free moment, the importance of living for now. We know what it means to face daily sickness and pain, and even how to keep ourselves busy during solitary weeks and months. That’s strength, and whether or not you feel it, if you’re still here, you have it. Despite our suffering, we’ve chosen life again and again. A shock like this pandemic can shake others in a way that it can’t shake us. We know that life can change in an instant, we’ve experienced it, and we have the tools to deal with it.
We know how to function while afraid. I was reading an essay on the coronavirus crisis by Rabbi Dr. Shmuly Yanklowitz, and was surprised when one of his tips was “be afraid.” Yanklowitz advises readers to “hold the fear,” but also to “own it, refine it, control it.”
I have a lifelong relationship with fear. If I were a dog, I’d be a chiweenie – loyal and good-natured, but shaking and peeing myself at every new experience. Last night while I was struggling to sleep, my limbs were stiff with tension, my muscles ready to explode – to fight or flee – until I was both frustrated and afraid. I knew that with my particular disease, this release of adrenalin was bad news, and would result in an exacerbation of illness – not great.
Then, twisting in my sheets, I thought of my own little chiweenie, Birdie. When she’s trembling with fear – because she’s going to the vet, or to the pet store, or someone starts a vacuum cleaner – it’s a purely physical response. Birdie has no control over it, and it’s not connected with her reasoning. I, too, was having trouble controlling my body’s fear response. But I did have a working mind, and my experience with chronic illness has taught me to trust it more than my unreliable body. In the end, I found I could accept my body’s fear without letting my mind join the party, and I slept.
We, the chronically ill, have learned to keep our fears in check through unexplained sickness, terrifying diagnoses, an unresponsive health care system and cataclysmic life changes. We have, whether we realize it or not, found ways to cope with, wade through, and survive our fear. Not everyone is so prepared.
We know what the world needs right now. The terrified cashier I encountered told me that it wasn’t the virus that frightened her, but the chaos, the panic, the breakdown of society – she looked around packed store, “All this.”
I felt a rush of compassion. Unlike my cashier, I did have reason to fear the virus – I know that when they talk about “the elderly and already ill,” they’re talking about me. But my sick life has inured me to disorder, change – even my own mortality. Not everyone can tap their experiences in the same way, and they’re struggling deeply right now.
When I was young, I learned about the sinking of the Titanic, and wondered how those doomed passengers felt as they watched their fate rush toward them. I decided that if I ever faced such a moment, I didn’t want to be the sort who’d knock down a child to take their life jacket, or steal a place in the lifeboats. Instead, I wanted to be the type who encouraged others, eased their fears. I wanted to be like the Titanic’s band members, who played until the end to keep passengers calm. I remember hoping that, when my proverbial ship went down, I’d be able to look up at the heavens, wink, and whisper, “So this is how it’s going to be.”
This pandemic, more than anything else in my lifetime, feels like that moment. In his book, “Man’s Search for Meaning,” Holocaust survivor Viktor Frankl writes, “Ultimately, man should not ask what the meaning of his life is, but rather he must recognize that it is he who is asked.”
So who am I? Who are you? Will we knock others down for a roll of toilet paper? Will we risk spreading disease to keep up the pretense of normalcy? Or will we become the helpers, lifting others up, speaking comfort to loved ones, offering kindness to strangers? Because if we, the chronically ill, understand anything, it’s that there’s more to life than health, prosperity or security. We know, from experience, that an act of kindness can save a life.
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GettyImages photo via ZOONO3
I write both fiction and non-fiction, and spent a decade writing news and features for a local newspaper. In 2013 my life took an unexpected turn when I grew ill with ME/CFS.
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