How I Learned to Live through Limbo
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…
