On Recklessness and the Coronavirus

https://www.nytimes.com/2020/03/25/opinion/coronavirus-anxiety-immunocompromised.html

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SPOKANE, Wash. — It’s likely I’ve always been this way, reckless with fear.

Even as a child I dived right into what terrified me, the dark basement, the cobwebbed underbrush. When I was told that I had multiple sclerosis almost seven years ago, I wanted to rush into the future and pull it down like rotten timber all around me. I was angry to be stuck in the present, with these common primary symptoms: numb feet, tingling legs, a fatigue I wore like a gown carved from stone.

It was infuriating not to know what could come next. Would I lose my ability to care for my children? Would I wind up bedridden, an invalid? I wanted to experience the whole course of my disease in one brutal stroke. I ached for control.

As the coronavirus began to circle eastern Washington State, I was again gripped by the nail-biting unknowability of all that would come to pass. I considered writing a casual social media post, Any peeps with Covid-19 want to share a fondue? An email blast: All those with fevers, dry coughs, etc., are invited to my house for hot yoga in a windowless room. Or maybe a short drive to the hospital, where I could slip into the E.R. and rub my face against the pale blue privacy curtains.

I know this sounds bonkers. These were irrational desires — the feeling that getting sick was the only way to stop worrying about getting sick.

When the news came of school closures, my husband’s concern spilled over. He told me, gravely, “I don’t think you should go to work.”

I work in a small children’s bookstore called Wishing Tree Books: Pretty shelves, cheerful lilac walls, a sun-bright stained-glass window. Going to work calms my anxiety. The books sing quietly to me with their humming, word-stippled potential. The thought of losing this space upset me. The shop opened only in November. If everyone stayed home, how would this new small business — magical as it is — survive?

My husband stewed. Usually I’m the one stuck in an anxiety spiral and he’s the one who guides me out of it. This role reversal meant one thing: that what he asked of me was sensible, necessary, even, but I bucked against it, scowling.

“I’ll keep my distance from the customers. There are disinfectant wipes and hand sanitizer.”

“You just had an infusion,” he reminded me.

“I’ll be careful,” I said, and the very thought of needing to be careful stoked my anger. I wanted to lick the countertops, nose the doorknobs.

At 41, I’m healthy, strong and immunocompromised. To stave off the progression of M.S., every six months I take an infusion called Ocrevus, a drug that suppresses my immune system. It lists upper and lower respiratory tract infections as two of its common side effects.

A few weeks after my March 1 transfusion, the website of the nonprofit group Multiple Sclerosis Trust suggested that patients consider delaying some treatments like mine during the coronavirus outbreak. But the National Multiple Sclerosis Society argues that “based upon what is known right now,” stopping treatment isn’t necessary.

This is a familiar, confusing landscape for those of us with chronic illness: Our powerful drugs have as much potential to protect us as they do to harm us. All things considered, I would have leaned strongly toward taking the infusion. Ocrevus has helped me tremendously since I started it a year ago. It has halted the formation of new lesions on my brain and cervical spine and cut my fatigue in half. It’s been a profound gift to move about the world with a lightness of being again; I don’t know if I could have surrendered that freedom.

But what’s the alternative? Setting myself up for infection, pneumonia, organ failure, death? It’s a question that tens of thousands of immunocompromised people, many in graver danger than I am, are asking themselves. I don’t want to return to a world clouded with M.S. fatigue, with disabilities both visible and invisible. But I also want to recover from the coronavirus if — when — I catch it.

I went to the bookstore keenly aware of my vulnerability. Still, I opened the shop with eagerness, grateful to be out of the house, to be making a paycheck, to be useful. My cheerfulness waned, however, customers streamed through the door to stock up on books in the face of isolation. Carefree children played with the toys and slurped from the drinking fountains. A man coughed lightly into his elbow.

I rang up purchase after purchase, alternately glad that the little bookstore was being supported and guilty for breathing this shared air. I thought of my children, of my husband. A migraine knifed into the left side of my face. I started to feel wild and ridiculous, as if I’d casually walked into a blazing house.

I texted my boss, “Hey, I don’t think I should come to work tomorrow.” I told her I probably needed to engage in social distancing. I said, “I’m sorry to do this to you.”

Her response was immediate and compassionate. “Do not worry about it at all!” She said that she and her husband were already planning to limit traffic in the store to people picking up orders. She added, “I feel less stress knowing you will not be there.” I readied for my departure, sprucing up the shelves, mopping the floors, disinfecting … well … everything. I spent my day’s pay on books for my kids. And I went home feeling a combination of relief and intense worry.

The worry wasn’t just for myself. It was for the small businesses like Wishing Tree, for the most vulnerable people in my community, for my kids. My 10-year-old son, on only his second day without school, messaged his friends, “Is anyone there? I’m lonely.” The words sat in a white sea with the cursor blinking on and off like a heartbeat.

I’d like to say my recklessness stopped with the cessation of work, but it did not. I let my son play with a friend down the street his first day out of school, trying and failing to enforce an outside-only rule. The next day I offered to take two of my friend’s kids on an adventure to the nearby forest.

My friend, Megan, also has M.S. She’s on an immunomodulator called Tecfidera. When I arrived at her house, we stood in the sun and marveled that we were the last of our group to allow a play date. We joked about it but behind the jokes was the knowledge that this was likely the last time, maybe for months, that our children would play together.

As I drove the kids I chided myself for putting us all in a car together. I’m a moron. Am I breathing in what could harm me, kill me, even now? Or what if I’m endangering Megan’s life, making her kids sick? The kids laughed together, and wiped themselves down with disinfectant wipes, and outside the sun shone. The car sliced through all of this terror and joy toward whatever the day would hold.

The woods were crowded. I’d never seen the trails so packed. We stepped to the side to allow others to pass, our avoidance a kindness. But you could see it everywhere, the fear, in the way people held their shoulders, their tense smiles.

It occurred to me that regardless of who we are, or of how healthy we’ve been, or of how carefully or destructively we’ve trod through our lives, we are now more aware of our mortality — more versed in “body mutinies,” as the poet Lucia Perillo called them.

While there is enormous fear to uncover, there is also a sense of wonder about how fragile we all are, how capable of care and love. It is a gorgeous thing to see how, even in our isolation, we shine off one another like so many free-standing mirrors.

My family is now carefully following the stay at home order. Even with all of this fear and uncertainty — perhaps because of it — every moment with my children feels like a gift. Maybe, like me, you’ve felt an urge to rebel, to minimize, to experience it all at once however awful it might be. But the only way to regain a sense of control is to protect one another. Our brief time together on this planet is worth the extra caution.

Sharma Shields is the author of the short-story collection “Favorite Monster” and the novels “The Sasquatch Hunter’s Almanac” and “The Cassandra.”

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