The Opposite of Loneliness: Essays and Stories (13 page)

Against the Grain

O
n my deathbed, I will instruct a nurse to bring me the following: a box of Oreos, a bag of Goldfish, a McDonald’s hamburger, an assortment of Dunkin’ Donuts, a chicken pot pie, a Hot Pocket, a large pepperoni pizza, a French crepe, and an ice-cold beer. In my final moments, I will consume this food slowly and delicately as I fade to oblivion. I’ll start with the donuts, lemon glazed and Boston Kreme, biting at each collapsible calorie as my relatives sigh and sign condolence cards. Next, I’ll sample the pizza and beer, happily slurping both as the doctors sew me up and take sad notes. “Oh,” they’ll say in deep baritones, “I think it’s too late. I think it’s the end.” Everyone will gather around me, crying softly and clutching each other, as I reach gloriously for the four-cheese Hot Pocket and Big Mac Supreme.

I’m allergic to stuff. Bread, pasta, cereal, pancakes, soy sauce, seitan, hydrolyzed amp-isostearoyl, triticum mono
coccum, hordeum vulgare extract, the list goes on. Eventually, it stops at a single word—a single little protein that lurks inside ingredients at the depths of unpronounceable obscurity. Gluten. The king of all polypeptide chains. The enemy of my existence and the hero of my deathbed feast. It hides in sauces and stews, artificial colors and flavors. It teems inside deliciousness to sneak down into my small intestine and kill all my villi.

It’s called Celiac Disease: an autoimmune disorder
manifested in an intolerance to the proteins found in wheat, rye, barley, and other common grains. Upon exposure to gluten, my enzyme tissue transglutaminase modifies the protein,
and the immune system cross-reacts with the small-bowel
tissue, causing an inflammatory reaction that truncates the
intestine lining and prevents nutrient absorption. In other words, my white blood cells freak out and attack the stuff like
it’s a virus, destroying the intestinal battlefield I unwillingly
provide.

My mother taught me words like
transglutaminase
a few years after she saved my life. As a baby, I spent weeks puzzling doctors and specialists with my stick-thin limbs and distended stomach. I couldn’t gain weight and threw up almost everything I ate. A test called a barium swallow finally revealed that my entire stomach had pushed into my chest, resulting in an emergency surgery to correct this hiatal hernia. Yet I stayed pale and ailing. Instead of improving, I slipped into malnourishment and was carried home from appointment after appointment to high chairs strewn with Cheerios, Saltines, and other plain poisons. My mother, devoid of expert answers, sought her own in the stacks of Boston’s best libraries. She pored over pages and symptoms and Latinate labels until she found an answer under the alphabet’s third letter. “Test her,” she demanded to the mob of white coats. They did. She was right. And at eighteen months, I ate my first rice cake.

* * *

If Celiac Disease were an obscure Indie band, I could brag that I knew about it before everyone else. These days,
GLUTEN FREE!
is stamped upon cardboard and cupcakes from Whole Foods to local cafés. Apparently, I’m super trendy. I’m the new vegan. I’m the hip new diet that’s sweeping San Francisco and Williamsburg.
Glamour
magazine prints gluten-free recipes and the
Daily Beast
featured an article last summer on its popularity among Hollywood stars. I think they’re crazy. Nevertheless, I welcome the awareness. When I was diagnosed in 1990, hardly anyone had heard of the thing. This year the gluten-free market hit $2.6 billion—a number expected to double by 2015. This rice-based explosion has origins from nutritionists in Sweden to doctors in New York . . . but one such source traces closer to home.

My brothers like to tease my mom that she’s obsessed with Celiac Disease. But she kind of is. She bakes endless batches of wheat-free cookies and breads, pouring them at me from ovens and pans, in the morning and in the mail. She often sends me e-mails about some newly safe product. “Rice Chex are gluten free!!!!!!!” she’ll type in the message—more excited than I could ever be over tiny crisp squares. In anticipation of Passover (the most hilarious holiday), my mom counts down the days like it’s the Advent, eagerly awaiting the sudden proliferation of flourless foods. I roll my eyes while half my school agonizes over the deprived horror of a week without bread, but my mom’s off at distant supermarkets, hunting the best and brightest kosher cakes.

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.

* * *

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.

* * *

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 of
f
!” 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.

* * *

Before I left for college, my mother insisted on contacting dining services to research what I could and couldn’t eat. She called companies and inquired about ingredients, compiling lengthy lists of foods that were and were not safe. But when I got to Yale, the lists got lost in all the novelty. I’d forget to consult them and stuck with the basics. Rice, chicken, vegetables, meat. There were new things to worry about: how to play beer pong without beer, how not to French-kiss a boy after his late-night pizza. When I finished my freshman year five pounds lighter, my mom looked worried and asked about the lists. I confessed that they were too hard to follow, and the summer before my sophomore fall, she sought to fully transform Yale’s food-allergy plan. With her credentials from Boston Children’s Hospital, she arranged meetings with our head chefs and supervisors, getting gluten-free cereals and bagels in dining halls, adding “gluten” labels on every dish’s information cards. It was unbelievable. It was impressive. Watching her make calls, I could see her eyes smile with the smallest hint of pride.

* * *

My junior year, I moved off campus. And with this departure came a farewell to the campus meal plan. I dismissed the hours and efforts as I had the cones and pies. I wanted to live in a house. I wanted a bigger bed. I was annoyed at the guilt I felt at leaving. After all, I hadn’t
asked
her to put in all that work. Miraculously, still, her efforts annoyed me. She’d arrive at Yale with six bags of groceries, lugging three kinds of gluten-free pretzels upstairs.

On vacations, I’d gain weight. From the moment my car crunched my driveway’s thick ice to the moment I’d pile back
into my aging sedan, I’d be presented with feasts every meal of the day. I hated it. Too guilty to refuse, I’d be forced to eat my weight in gluten-free goods. Plans to run every day and cut college’s convenience-store pounds were thwarted each winter and spring by her earnest offerings. On a warm Saturday this April, I awoke to a massive pile of blueberry pancakes. I was still full from the previous night’s chicken curry, and the sight of the plate finally forced me to crack. My mother stood silently as I cruelly complained she was making me fat. “Stop feeding me, Mom,” I said with a cold exasperation. “How the hell am I supposed to stay thin when you feed me all this damn food?” Compulsively accommodating, she apologized for her hours of labor, her chocolate-chip banana muffins, her walnut fudge brownies. She moved my plate to the sink and retreated to her office, leaving me near tears in a kitchen that still smelled of baked maple, shamefully eating a yogurt and going upstairs.

* * *

A year later, I’m loose with my diet. I take risks, I forget to double-check. At restaurants, I don’t bother talking to the chef; in my kitchen, I’m too lazy to drain my pasta in its own colander. I kiss my boyfriend after he’s had a beer; I neglect to check when caramel color is involved. My physical symptoms have largely subsided, and any trace amount of gluten in my blood affects me mostly in the vague statistical increase of my chances for cancer. I don’t think about my red blood cell count when I eat cheese off plates that might have touched crackers. I’m young. I’m fine. It’s just food, I say, again and again. It doesn’t matter, it’s really just food.

* * *

On a cold morning this past February, my family went out for brunch the day after my play. We went to a place on Chapel Street, trudging through plow piles and slush into its elegant doors. I was happy to be with my mother, to talk and to hug. I’d had a difficult month with rooming dramas and summer plans, and it was nice to relax in the comfort of family. When it was time to order, I requested a vegetable omelet and roasted potatoes to replace the home fries. “I’m allergic to gluten,” I added after my order. “It should be fine but you can let the chef know.” I could feel my mom eyeing me over the winter flowers. She managed to restrain herself until our orange juice came in thin brittle glasses.

“Marina, honey,” she began, “did you want to ask the chef to cook your eggs on a clean griddle?”