Beasley - Dont kill the birthday girl: tales from an allergic life

Copyright 2011 by Sandra Beasley

All rights reserved.
Published in the United States by Broadway Paperbacks, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York.
www.crownpublishing.com

Broadway Paperbacks and its logo, a letter B bisected on the diagonal, are trademarks of Random House, Inc.

Originally published in hardcover in the United States by Crown Publishers, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York in 2011.

Library of Congress Cataloging-in-Publication Data Beasley, Sandra.
Dont kill the birthday girl: tales from an allergic life/by Sandra Beasley.
p. cm.
1. Food allergyUnited StatesCase studies. 2. Beasley, SandraHealth. 3. Food allergyPatientsUnited StatesBiography. I. Title.
RC596.B425 2011
362.1969750092dc22
[B] 2010043724

eISBN 978-0-307-58813-5

Cover design by Gabrielle Bordwin and Jean Traina
Cover photography by Amana Productions, Inc./Getty Images (cupcake);
Fuse/Getty Images (skull)

v3.1

For my mother,
who taught me the balancing act

Contents

Introduction

T here are only two birthdays that stand out in my memory as distinct, chronologically certain events. One: my sixteenth birthday, when we watched Ferris Buellers 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 shebanggirl, swing, unhooked chainswent 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 hoursachy, glands swollen, stone-cold sobercooking 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. Cheeses? 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 shed designed. Some years it was sunflower-margarine Rice Krispies treats, and some years it was an applesauce-and-cinnamon-raisin bundt cake. Id get my serving. Then wed dish out the real dessert of cake or brownies or pie 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, dont 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 its a phrase I repeat as part joke and part prayer.

Dont kill the birthday girl.

Its 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? Hes 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 cant help but wish it wasnt their last impression of me before the long drive home.

I am allergic to dairy (including goats milk), egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard. Im also allergic to mold, dust, grass and tree pollen, 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 couldnt eat struggle to empathize with their childs 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 widespreadand 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 persons comfort food is another persons enemy. One persons lifesaver is anothers poison.

I thought my familys 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.

Dont 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. Theres a reason theyre called allergy attacks; you never know where a food can be lurking.

But those with food allergies arent victims. Were people whofor better or for worseexperience 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