The Opposite of Loneliness Essays and Stories(43)

Yet above all this, she insists on vigilance. Gluten is hiding everywhere in everything, and even the tiniest crumb—the tiniest crumb of a crumb—could get me sick. It’s more important than the mere stomach issues; failure to follow a gluten-free diet grossly increases one’s chances of developing thyroid cancer, diabetes, and other life-threatening diseases. These, she taught me, are the real reasons to check and double-check. The reasons she uses separate pasta strainers and knives. I learned to read labels for hidden ingredients, to call the company and ask the source of the caramel color and the modified food starch. To avoid foods fried in the same oil that had fried breaded meat. To speak with chefs at restaurants and ask to use a clean part of the grill, a clean salad bowl, a flourless dressing. We were careful. We were the best. And at home I never, ever got sick.

It wasn’t easy. When I was in elementary school, my mom got fed up with the lack of resources for parents with newly diagnosed children and decided to take matters into her own hands. Working with doctors in the gastroenterology unit, my English-major mom founded Boston Children’s Hospital’s Celiac Support Group. She had left her job to raise my brothers and me, but her home office desk soon reemerged from my dad’s papers. She built the group from the ground up, hosting meetings that turned into conferences, memos that turned into newsletters. She became the local expert on the derivatives of malt vinegar and the minutiae of cross-contamination. Inevitably, I became a Celiac poster child. I wrote advice columns and hosted an educational video. “It’s not a big deal,” I’d say to pitying adults or whining peers. “It’s just food. It’s not a big deal.”

The thing is, it sort of was.

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Growing up, I liked standing out. I wore rainbow pajama pants to school and acted in class plays, sang solos in assemblies and always raised my hand. I had a calm confidence that followed me through elementary and middle school—straightening my hair and holding the hand of my prepubescent boyfriend. At lunch I sat with those girls (eyeliner and lip gloss), shrieking like the rest of them and stealing boys’ hats. We all loved attention, but when it came to the food on our fake wooden tables, I wanted nothing more than to blend into the crowd.

By sixth grade, brown bags had been discarded for Styrofoam trays. Home-packed lunches were reserved for the kids with duck boots or Power Ranger shirts. But each afternoon I pulled out a thick black thermos, filled to the steaming brim with gluten-free spaghetti or soup. Sometimes my mom packed me rice-cake sandwiches or boiled artichokes and I’d eat them quickly to fend off the endless string of embarrassing questions. Why are you eating that? What is that weird cracker? Will I catch your thing if I share your drink? Most of these I could shrug off with a laugh and a joke. One question, however, had no easy answer, and I dreaded its repetitions like the inevitable crumble of my dry bread.

Hey, what happens when you eat wheat?

Diarrhea. But I never told them that.

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My mom did anything and everything to save me from these moments. Yet her earnest insistence on equality often left me embarrassed. On school field trips, she would call ahead to my teachers, dropping off a gluten-free cone I could have when the class stopped for ice cream. “Marina!” the teacher would call out from the front of the bus. “Come get the special ice cream cone your mom dropped off!” At home that night I’d yell across our kitchen’s floors, Why would you do that? Why wouldn’t you ask? Why do you always embarrass me? She’d stand there, wide-eyed, hurt. “I thought you might like a cone,” she’d say. “I know you like cones with your ice cream.”

Thanksgiving was the same. To ensure my experience was separate but equal, she’d bake two versions of each pie: pumpkin, apple, and chocolate pecan. Rather than be grateful, I’d sulk throughout my family gathering, embarrassed and guilty. My uncle Jim always commented on the pies: “Three gluten-free pies! You spoiled girl!” I’d seethe and blush, turning back into the kitchen to cut carrots or fold fancy napkins. There was no escaping it. Summer camp and sleepovers were the same routine—counselors and parents embarrassing me with special snacks tucked away by my mom.

On my first Halloween trick-or-treating, she called ahead to all our neighbors to make sure they had a candy I could eat, offering M&Ms and Skittles as two safe examples. It must have taken hours for her to call each family and elderly man, but all I could do was complain when six years later our block was still known as Celiac Street. “Don’t bother,” my friends would laugh when we were older and on a mission, lugging pillowcases instead of plastic pumpkin bins. “All we’ll get are stupid M&Ms.”

Yet I never identified. I never defined myself by my allergy to wheat. I’d respond to letters in my column from kids who felt restricted and upset, afraid to travel or go on a dinner date. “It’s just food,” I’d write, again and again. “It doesn’t matter, it’s really just food.” I didn’t want three special pies or an ice cream cone—all I wanted was to blend in and move on with my life. I saw the sincerity behind my mother’s gestures, but it all seemed excessive, uncalled for. She’d be halfway through researching whether the canned tuna fish was gluten-free before I could remind her that I hated its saltiness. I’d laugh at her love and scoff at her efforts. It didn’t matter to me. I was still too young to try on her shoes.

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