How I Learned to Live through Limbo

Debi Lewis
Curious
Published in
5 min readOct 5, 2020

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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
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…

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Debi Lewis
Curious

Writer, cooks like MacGyver. Author of KITCHEN MEDICINE: HOW I FED MY DAUGHTER OUT OF FAILURE TO THRIVE (Rowman & Littlefield, 2022). She/her. www.debilewis.com