Copyright © 2011 by Sandra Beasley
All rights reserved.
Published in the United States by Crown Publishers, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York. www.crownpublishing.com
Crown and the Crown colophon are registered trademarks of Random House, Inc.
Library of Congress Cataloging-in-Publication Data
Beasley, Sandra.
Don’t kill the birthday girl: tales from an allergic life/by Sandra Beasley.
p. cm.
1. Food allergy—United States—Case studies. 2. Beasley, Sandra—
Health. 3. Food allergy—Patients—United States—Biography. I. Title.
RC596.B425 2011
362.196′9750092—dc22
[B] 2010043724
eISBN: 978-0-307-58813-5
Jacket design by Gabrielle Bordwin and Jean Traina
Jacket photography: Amana Productions Inc./Getty Images (cupcake);
Fuse/Getty Images (skull)
v3.1
For my mother,
who taught me the balancing act
Contents
Cover
Title Page
Copyright
Dedication
Introduction
Chapter One
I AM JANE’S ANAPHYLACTIC SHOCK
Chapter Two
SURVIVING CHILDHOOD
Chapter Three
EAT, DRINK, AND BE WARY
Chapter Four
THE GREAT PEANUT SCARE
Chapter Five
KING SOY AND THE BODY POLITIC
Chapter Six
GILDING THE GOUDA
Chapter Seven
KISS OF DEATH
Chapter Eight
ON THE ROAD
Chapter Nine
WHAT DOCTORS REALLY THINK
Chapter Ten
THE NATURE OF NURTURE
Acknowledgments
Introduction
There are only two birthdays that stand out in my memory as distinct, chronologically certain events. One: my sixteenth birthday, when we watched Ferris Bueller’s Day Off. That was the year my friend Elizabeth, while using the swing anchored to the underside of our second-story deck, pushed off so hard that the whole shebang—girl, swing, unhooked chains—went sailing twenty feet out into the woods behind our house. Two: the year I got diagnosed with mononucleosis, too late to cancel an Italian-themed dinner party. So I stood in front of a stove for two hours—achy, glands swollen, stone-cold sober—cooking pasta for two dozen while my friends went through six bottles of wine. That was, undoubtedly, my twenty-first birthday.
Beyond that it blends into a murky ur-party. Which years did we go to Chuck E. Cheese’s? When did I get my Rainbow Brite doll? Which years were my father home, and which years had the army sent him off to the War College, Saudi Arabia, Bosnia?
There is one constant in my birthday memories. When it came time for a cake, my mother would bring out whatever Sandra-friendly sweet she’d designed. Some years it was sunflower-margarine Rice Krispies treats, and some years it was an applesauce-and-cinnamon-raisin bundt cake. I’d get my serving. Then we’d dish out the real dessert of cake or brownies or pie à la mode for everybody else. After singing, after blowing out candles, after presents had been opened, after everyone had eaten, someone would say it:
“Now, don’t kill the birthday girl.”
Which meant no kisses, no hugs, no touch of a hand or mouth. From that point onward, anyone who touched me ran the risk of giving me hives, or worse. Even today it’s a phrase I repeat as part joke and part prayer.
Don’t kill the birthday girl.
It’s the same at every holiday. My uncle Jim is notorious for forgetting about my allergies, holding out a dish of ice cream and asking, “Want a bite?” He’s the fun bachelor uncle, the one who rides a motorcycle and would give a little girl a windup sewer rat, complete with blinking red eyes, as a Christmas gift.
Once upon a time it would fall on my mother to protect me at the end of the night, when the aunts and uncles and cousins were making the rounds for good-byes. Now I step to the side on my own. Everyone understands why I avoid contact. Yet I can’t help but wish it wasn’t their last impression of me before the long drive home.
I am allergic to dairy (including goat’s milk), egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard. I’m also allergic to mold, dust, grass and tree pollen, cigarette smoke, dogs, rabbits, horses, and wool. But in particular, I am one of the more than 12 million Americans who has been diagnosed with food allergies, a figure that includes almost 4 percent of all children. Even with so many of us in the conversation, there are huge disconnects in the dialogue. Parents who have never met a food they couldn’t eat struggle to empathize with their child’s allergies. Those crusading for community accommodation misguidedly conflate allergies with intolerance and confuse discomfort with anaphylaxis. Advocacy groups focus on youth allergies and largely ignore the complexities faced by those who grow into adulthood, travel, marry, and must figure out how to raise children of their own. There are multiple dimensions of data out there, but no one has set the gyroscope spinning.
Allergies are quirky beasts. Unlike many syndromes, they are primarily sorted according to their outside catalysts. (Have you ever heard someone claim to have type-peanut diabetes? Eggplant flu?) Allergies are widespread—and widely misdiagnosed. There is a whole range of symptoms and degrees of sensitivity, and these symptoms can change for any given individual at any time. For those with allergies like mine, each day requires vigilance in terms of what we do, the company we keep, and where we sit in relation to that bowl of mixed nuts. One person’s comfort food is another person’s enemy. One person’s lifesaver is another’s poison.
I thought my family’s habit of calling the foods I can eat “Sandra-friendly” was unique, until I saw a book by Emily Hendrix called Sophie-Safe Cooking: A Collection of Family Friendly Recipes That Are Free of Milk, Eggs, Wheat, Soy, Peanuts, Tree Nuts, Fish, and Shellfish. The more I have read, the more I realize a whole culture of catchphrases has emerged in addition to the key medical terminology. “Safe,” “friendly,” “free”: these words come up over and over again in literature about allergies.
Don’t kill the birthday girl. Leftover omelet clings to the edge of a breakfast plate. Butter greases the stir-fry. Walnuts go commando in an otherwise tame brownie. There’s a reason they’re called allergy “attacks”; you never know where a food can be lurking.
But those with food allergies aren’t victims. We’re people who—for better or for worse—experience the world in a slightly different way. This is not a story of how we die. These are the stories of how we live.
CHAPTER ONE
I Am Jane’s Anaphylactic Shock
In the early 1990s, many Americans were swept up by an interest in healthy eating. The U.S. Department of Agriculture began working on its Food Guide Pyramid, which would be released in 1992. When I first heard about this “pyramid” in fourth grade, I assumed it was based on the cuisine of Egyptians (blame the world history unit we had finished only a few days earlier). I imagined the pantries of ancient Cairo: fish, cakes of grain, honey, tiger nuts, and the occasional wayward canopic jar of kidneys.
My fourth-grade teacher invited a professional nutritionist, the mother of one of the other students, to come in for a lesson on maintaining a proper diet. She was a short, trim, olive-skinned woman with a clipped voice. She moved her pointer with enthusiastic precision over each part of her diagram, which presaged the portions that would be recommended by the USDA. She began by suggesting a soft, cu
shiony foundation of six to eleven servings of grains per day. This was in an era when Wonder bread and brown rice stood side by side as equals in the ranks of starch. Beans and beef, eggs and nuts—all were packed neatly into the same block of two to three servings of protein.
Three glasses of whole milk? Yep, according to her diagram, that was the way to go. She tapped her pointer against the pyramid’s penultimate tier.
“Milk prevents osteoporosis,” she intoned.
No one asked the obvious: What was osteoporosis? Instead, one of my classmates raised her hand. “What if you don’t drink milk?” she asked.
“There’s cheese, if you don’t like the taste of milk,” the nutritionist replied. “The important thing is your daily calcium intake.”
“What if you can’t eat cheese?”
The nutritionist paused. “You should eat eggs,” she said.
“What if you can’t eat eggs?” another kid asked.
I knew what they were getting at. Three days earlier had been a much-anticipated pizza party. I’d gone to the library instead, to avoid exposure, which had prompted an explanation of my long list of food allergies.
My classmate raised his hand. “What if you can’t have beef? Or ice cream? Or pizza, not even if you pick the cheese off?”
“Well,” the nutritionist said brightly. “That’s not somebody designed to survive, now, is it?”
She continued on to “Fats, Oils & Sweets,” as I slumped down in my chair.
That was then. Today, vegan parents are raising vegan kids in vegan households, proving that not only can you survive without dairy but you can also procreate and thrive. Dietary restrictions and allergies have gone mainstream. When I hear that at Disney World, children with gluten allergies can order the Mickey Mouse pancakes and know that there is a gluten-free mix available, I think, Things are different now.
Then again, when on a weekend road trip I stop in at a rural Friendly’s and ask for something, anything, guaranteed free of milk, eggs, or lard—only to watch the waitress shrug helplessly—I’m not so sure.
“Cereal?” I ask.
“Cereal? We don’t have that,” she says. “Where did you find that on the menu? Oh, there. I see it. Huh. No. What about the hash browns?”
“Are they cooked on the same griddle as stuff that’s buttered?”
“Well, it’s one big flattop back there.” She waits pointedly as I weigh the odds. “How ’bout some coffee?”
“Sure,” I say. She brings it with a side of cream.
When I was born in 1980, the world was a small-town waitress: it didn’t know what to do with me. Fussing and crying, I would not breast-feed. When my parents tried to give me formula instead, it ran right through me. My stools turned black from internal bleeding. Within my first month I was back at the doctor’s office, underweight and jaundiced. That’s when the testing began. Goat’s milk? Just as bad. Soy milk? Couldn’t keep it down.
The doctors sent me home with a diagnosis of a broad spectrum of allergies, which wouldn’t be further determined until I was a little older. As an infant, my immune system was too underdeveloped to exhibit a traditional, identifiable reaction.
“So we raised you on juice and water,” my mother told me. “Apple juice, then pineapple juice with Neo-Calglucon added for calcium. Rice. Creamed chicken. And on your first birthday, you had your first appointment with Dr. Latkin. You wore a white dress with pink polka dots.”
My parents lived in a little brick house on 10th Road in Arlington, Virginia. My father, Mike, worked at a law firm downtown. In the years since his tour in Vietnam, he’d taken to growing his sandy-blond hair defiantly long, cutting it only for periodic reserves-duty weekends at Fort Meade. My mother, Bobbie, was a brunette beauty, a painter and printmaker who rented studio space at the Arlington Arts Center.
They had waited five years after marrying to have me. Like other first-time parents, they were terrified by the responsibility of keeping me safe from the Big, Bad World. Unlike other parents, they had to deal with the fact that the Big, Bad World was particularly out to get me. Take the Biscuit Incident: On a trip through Nashville, after hours of driving with a squalling, hungry three-year-old, they checked into Opryland and tried to figure out how to quell my growling stomach. My father’s plate came with a plain-looking biscuit on the side.
“You barely had a crumb,” my mom said, still defensive after all these years. “We didn’t know it was buttermilk.” I began wheezing and hiving, spluttering at the liquid Benadryl they tried to ease down my throat. They waited, watching closely, unsure what to do. After an hour, I calmed down—probably as much from exhaustion as recovery—and fell asleep.
The next day my father was tied up in a conference, and my mother would not drive in an unfamiliar city. “The worst part was going back to that same hotel restaurant the next morning,” she admitted, “and having to try again. We didn’t know where else to take you.”
By the time I was five, they recognized they had to instill absolute protective instincts. The traditional admonition of “Don’t accept candy from strangers” became “Don’t accept food—period.” I tried to obey (and if I didn’t, as my mother always points out, my body played tattletale). But sharing snacks is one of those critical gestures of friendship for the under-ten set, up there with trading bracelets or calling out someone’s name during a game of Red Rover, Red Rover. It didn’t take long before I phoned home from the nurse’s office, dosed with Benadryl and snuffling through tears.
“It was just a potato chip,” I said, mystified. “One potato chip!”
A sour-cream-flavored potato chip looked the same as the plain kind I ate all the time. How was it that I could react to something I couldn’t even see? Working on a report for my third-grade class, I asked my allergist how the body recognized the invisible presence of milk.
“Imagine a workbench,” Dr. Latkin said, “the kind with different-shaped holes for each block.” I pictured my Fisher-Price toy at home, though that was baby stuff; I’d long since moved on to cultivating a collection of She-Ra action figures. The workbench, he explained, was like a kind of cell that could produce an allergic reaction.
“Now, you’ve got your blood,” he said. “Little bits of food come floating down the bloodstream, like blocks.” I nodded.
“If the shape of the block doesn’t match the shape of the hole,” he explained, “you won’t have a reaction.” But it didn’t take much to change the shape of the block, he said. For example, cooked broccoli might have a different shape than raw broccoli. I visualized little crowns of broccoli bobbing along in my blood, a forest put out to sea.
“If the shape of the food matches the shape of the hole,” he said, “your body tries to eliminate it.” I remembered the red plastic hammer I had used to push each block through its hole. Wham! Wham! Wham!
“That’s a reaction,” he said.
I stared at him wide-eyed. No wonder I got all hivey. Somewhere inside me, I was being hit with a hammer.
It’s not easy to explain allergies to a young child. My grasp of anatomy had a ways to go. This was also the age when I believed boogers were small, simple-minded animals that spent their lives roaming inside your nose, cleaning up whatever they found by eating it. To blow snot, I thought, with a twinge of guilt, was to kill one.
My classmates understood that my allergies made me different, though they weren’t quite sure of the mechanics. They saw that I got out of sponge duty in the cafeteria (the slop water they used to wash down the tables was perpetually contaminated with milk). On the rare days I could buy Tater Tots, I was allowed to cut in the hot line rather than parade past all the stations I couldn’t touch. Knowing I couldn’t buy candy out of the on-site vending machines, my mother every day packed four or five strawberry candies—hard lozenges filled with jam—in my lunch bag, sugar capital that made me the kingpin of Lunch Group B. In some ways, it seemed like “allergy girl” had a pretty sweet deal.
Thanks to my asthma, a fre
quent companion disease for allergies, when the other kids had to run the mile, I got to work the stopwatch and record times instead. One day my friend Karen crossed the finish line and let her forward momentum carry her into me, knocking us both down. The stopwatch and clipboard went flying. As we lay in a sprawled heap, she proceeded to rub her cheek against my forearms, over and over.
“What are you doing?” I asked, panting for breath.
“Whatever you are,” she said, “I hope you’re catching.”
I had to have medications within quick reach. Since we were instructed to leave backpacks behind when traveling around school, I became the only kid at Haycock Elementary to carry a purse, the first of many hauled around over the years. There was the pink one with blue trim, an all-time favorite, ruined on a hot day at the funfair by a melted Jolly Rancher. There was LeSportsac, which I smugly informed my friends was “a French label.” There was the black leather hand-me-down from my mother, still packed with musty, folded squares of Kleenex that bore lipstick blots.
Later in life, I would look on in awe at my friends’ clutches and baguettes. I have never had a purse that wasn’t wide enough for an EpiPen, deep enough for an inhaler, and complete with a zippered pocket for Benadryl. The plastic orange chairs used in our classrooms were not designed for purses. Their backrests had rounded-down corners that offered no resistance to gravity. So whenever I twitched or stretched in my seat, the purse would fall to the linoleum, necessitating a backward reach that made it look like I was trying to pass a note. Grab; hang; thunk. Grab; hang; thunk.
Picture a kid in thick-lensed glasses, indigo-dark jeans (my mother refused to buy “that worn-out stonewashed look”), a beglittered T-shirt threaded through a plastic buckle-loop that gave it an asymmetrical hem, and a slap bracelet. Now add the purse of a thirty-two-year-old mother, complete with pills, tissues, safety pins, and too many pennies. That is the hybrid reality of a child with food allergies.
I took refuge in books. My grandfather, a doctor, noticed my love of reading and began passing along his monthly Reader’s Digest whenever I went to visit. I was fascinated by all the features (“Drama in Real Life,” “Laughter, the Best Medicine,” even that diabolical Word Power quiz), but my runaway favorite was “I am Joe’s …”/“I am Jane’s …,” a series written from the point of view of various body parts as they experienced critical injury or illness. The author, J. D. Ratcliff, assuming the voice of “Joe’s back,” had my full attention as he explained what it felt like to herniate, undergo a CT scan, and slip those little disks back into their proper lumbar positions.
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