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How I Learned to Live through Limbo

Debi Lewis
Oct 5 · 5 min read
a photo of a woman’s legs in rolled-up jeans and red converse low-top sneakers, balancing on a cement wall
a photo of a woman’s legs in rolled-up jeans and red converse low-top sneakers, balancing on a cement wall
Photo by Fallon Michael on Unsplash

When my daughter was five, I thought it was possible she’d have to give up food.

It sounds ridiculous and far-fetched — like the world we’re all living in right now — but it wasn’t. She’d been diagnosed with a poorly-understood disease of the esophagus whose symptoms were set off by food proteins. The reactions to foods in this disease — eosinophilic esophagitis — are delayed, capricious, and don’t always turn up the usual suspects. Unlike COVID-19, there was no reliable test for it then but trial and error, a long and arduous process of food elimination and reintroduction.

In the midst of it, I connected with a woman whose teenaged daughter had been diagnosed with the same disease six years earlier. Food trials hadn’t helped her daughter; instead, she spent years subsisting on a vile-tasting specialized liquid formula and nothing else. The family’s life had changed drastically — no more meals together, no more cooking lest it upset the person in the house who might never taste food again. I listened to this — a worst case scenario for me — and tried not to sob audibly.

As I waited through the year of testing for my daughter, I pushed aside every comment from friends about how great it would be when these food trials were over, when we’d remove the offending food (whatever it was) from her diet and go on with our lives. I tried not to hear anything else about the future. I tried not to look forward to the end or even imagine what the end would be. There might not be an end.

Of course, I wasn’t always successful. I wondered: would my daughter be like the teenager who had gone without food for years? Would she be like the majority of children described by her doctor, who end up eliminating just dairy and feel fine? Or would she be like the kids in the Facebook groups, losing more foods or gaining some back, a lurching dance that had mothers scouring the web for recipes and substitutions?

a white plate with a frown drawn on it and a fork and knife on top, on a pink background
a white plate with a frown drawn on it and a fork and knife on top, on a pink background
Photo by Thought Catalog on Unsplash

It’s not so different from right now, our time of stay-at-home, work-from-home, school-from-home unfolding like that same lurching and unpredictable dance. When my older daughter went away to college, I didn’t know how long she’d get to stay. I still don’t. My younger daughter’s high school has announced that classes will be remote “indefinitely.” My husband and I have worked from home since March, and neither of us can imagine going back to work among other people anytime soon. Sometimes, my younger daughter — who accepted her strange diet and all those endoscopies years ago without question — will ask if I think she’ll be going to camp next summer, or if my far-away parents will be able to visit.

“I wish I could give you an answer,” I tell her truthfully, and remember saying the same thing when people asked how long it would be until she’d be “better.”

I had no way of knowing, in those strange years, which direction we were going: remission or loss of more foods or someplace in between, so I closed my eyes and waited for the train to stop. And in the end, three years later, we found we had been traveling an uncharted path: misdiagnosis, the wrong problem all the time. We’d taken such a long detour that my rage over lost time and misdirected energy would cover everything for many years, having learned a lesson about expectations I was sure I’d never need to use again.

But I find myself fighting now to remember it. We could be in this pandemic nightmare for a long time. We could also find an extremely effective treatment and a vaccine in a matter of months. We could all end up sick, or our masks and our hand-washing could keep us safe. Our children — the ones in college like my older daughter or high school like my younger daughter or the grade school children like those of my friends — could come out of this with long-term mental health challenges or more resilient than they were before. We could rebuild our economy with even more financial stratification among people, or we could come out constructing a new one with more equity. We have no idea what’s next.

And it’s scary.

And we cannot control it, not much.

So I am doing what I did before: working when I can, cooking for my family, reassuring my daughters, going outside to look at the sky and the leaves and what seems like a sudden surge in the presence of cardinals in my yard. I am taking deep breaths. I am crying, sometimes, and sometimes I am doing everything I can to hold back the tears. Once again, I don’t know what’s next. I can’t possibly.

If I could share just this one piece of advice with the world from my time in limbo, it would be this: Hold it all loosely. Don’t imagine the magical day when the pandemic and all its devastation will be over, or if you do, hold that vision alongside all the possible visions of the future, a collection of delicate berries in your hand. Let them rest there and don’t hold them too tightly. Or better yet, set them down somewhere and live here, in a world where you can still do so many things, where even in the midst of it all, there is still some grace.

Last week, my daughter who I’d struggled so to feed admitted she wasn’t hungry for dinner — not because of some medical issue or a relapse of the illness she’d never really had, but because she’d walked (6 feet apart and masked) to get a Frappucino with her friends just an hour before. I pictured them spanning the sidewalk and the parkway, laughing, masks obscuring their smiles but not their dancing eyes. I pictured them seeing the Starbucks, shrugging, heading in, a surprise, a why-not? There was no reason to check ingredients, to worry over cross-contamination. Without a care for anything but the sweet delicious treat, my daughter whose diet was so limited as a little girl bought the same indulgence as her friends. I could never have pictured that eight years ago when I was worrying over every little morsel.

I know from experience now to let my hands fall open, the reins dropped. I might not be able to predict the end of the road, but, regardless of my worrying, the end of the road will arrive. When I get there, my hands will be open, ready to receive what’s next.

Curious

Find out what others have already figured out. Follow our publication to join our community.

Debi Lewis

Written by

Writer, cooks like MacGyver. Words: NYT, Huffpo, ScaryMommy, Kveller. Rep: Sharon Bowers (Folio Literary) Pronouns: she/her. www.debilewis.com

Curious

Curious

A community of people who are curious to find out what others have already figured out // Curious is a new personal growth publication by The Startup (https://medium.com/swlh).

Debi Lewis

Written by

Writer, cooks like MacGyver. Words: NYT, Huffpo, ScaryMommy, Kveller. Rep: Sharon Bowers (Folio Literary) Pronouns: she/her. www.debilewis.com

Curious

Curious

A community of people who are curious to find out what others have already figured out // Curious is a new personal growth publication by The Startup (https://medium.com/swlh).

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