When I was five months old, she followed orders by giving me a small, exploratory lick of an ice cream cone. Not many children holler after getting their ice cream. She could hear my cries hoarsening by the second as my throat began to swell. She added that noise to the dictionary of cries developed by all new moms: hungry cry, attention-hungry cry, overtired cry, scared cry, and now closing-airway cry.
The rest of my reaction vocabulary slowly emerged. Often I tried to ignore an attack at first, embarrassed I might have done something wrong and fearing the trouble that would follow. The giveaway was the audible wheezing as my asthma kicked in. I made a peculiar squonk sound when the back of my mouth itched: a loud, convulsive flexing of tongue against palate that I still do today, often four or five times in a row, unaware I’m even doing it. My mother took to watching for these warning flares, sometimes recognizing a reaction before I had fully admitted it to myself.
One night, when I was ten, she secretly switched from using hard-to-find Fleischmann’s sunflower margarine (unsalted sticks only—not regular, not “light,” not in the tub) to a new, more widely available nondairy spread. She was tired of having to hunt through three different grocery stores every time she went shopping. I noticed the mashed potatoes were a little smoother and more golden but figured it had to do with using russets versus Yukon Golds. After my first few bites, I noticed her watching me. Intently. “Do you like the mashed potatoes?” she asked.
“Yeah,” I said. “Why?”
“Well, you’re rubbing at your mouth like you do sometimes when your lips itch.” (My mother, the detective.)
One round of squonking and a Benadryl later, I was sleeping it off and she was tossing the impostor spread in the trash. The next day she got out her shopping list. Fleischmann’s, she added back. Unsalted.
When a reaction struck my esophageal system, I could describe the inflammation only in terms of “bubbles” rising up in my chest. The frequency and intensity of the pressure, which seemed to rise, swell, and pop in waves, then had to be converted into usable medical information on whether the Benadryl was working. “This is serious,” I remember my mother saying in frustration while on the phone with a Kaiser Permanente nurse. “She says the bubbles are getting bigger.”
There were always concerned phone calls—if not to our HMO then to her father or brother, both doctors. My grandfather was a navy officer who had worked with NASA’s space program. He was used to treating stoics and was initially skeptical about the severity of my allergies. On one of my first visits to my grandparents’ house, I scooped my finger into a bowl of cottage cheese and then touched my cheek. Within seconds, a line of hives rose up. That was when he became a believer.
We were fortunate to never encounter disbelievers among the staff and teachers at my schools. Or their skepticism, if present, was trumped by their fear of lawsuits. They wanted to help—assuming we could just, please, get those forms turned in first. Please. In duplicate. Every year brought one form for my Benadryl, one for my inhaler, one for my EpiPen; one note for field trips, one for allergy shots, and one requesting the early lunch shift, when the cafeteria tables were cleanest. Every year, slightly different versions required precise wording and fresh signatures. (My mother, the contracts lawyer.)
Once I was in school, my mother went from being the one making the calls to the one who received them. Constantly. Even after you create a protocol for lunch, food pops up in a myriad of settings. When we read Dr. Seuss in second-grade story time, the class made green eggs and ham. In art class, we used pasta shells and wheels for texture. We were studying the Spanish explorers in world history, so was there a kind of taco I could eat? Could I try the funnel cake on Field Day?
Rather than try to shepherd from afar, my mother simply came along on field trips. Accidents still happened. When thirty kids from our elementary school went to the Benihana Japanese steakhouse for lunch, I ran over to my mom to share my news: “I can eat steak!”
“How do you know that?” she asked.
“I just ate some! A bite. Can I have more?”
In the chaos of a hibachi table, I had been diced a portion of teriyaki beef instead of chicken. I not only lived to tell the tale, but for a honeymoon period I could eat steak. My mom, sensing that it was a fluke, restricted access to either very special home-cooked meals or when absolutely nothing else was available, and never more than a small portion. Even with only infrequent exposure, my mast cells soon caught on to the cow. The reactions began, and became quite vicious quite quickly. My farewell bite of filet mignon was in 1991, followed by an hour of making squonking noises as I curled up on the couch.
Given my spectrum of issues—a variety of allergens, a capacity for anaphylaxis, and an ability to develop new sensitivities upon repeated exposure—my allergies constitute a disability. I am protected under the Rehabilitation Act of 1973, Section 504, and the Americans with Disabilities Act of 1990. Had my parents judged a school ineffective in managing my food allergies, they would have had legal recourse to insist on a binding “504 Plan,” including an individual health plan (IHP) that would have covered everything from evaluating my capacity for self-care to listing all my allergies and their attack symptoms to naming safe food substitutions. They could have demanded that a “Severe Food Allergy Alert” flyer be posted throughout the school. They could have confirmed that my bus driver (by name) had been instructed not to allow eating on the ride to school.
In other words, they could have swatted a fly with a machete. But for every forty times a 504 Plan would be overkill, there might be the one time when it is critical. Back when I was a kid, and food was being handed out to everyone else, my “accommodation” equaled having the teachers know not to give me a share. True accommodation would have been providing a comparable substitute, but I was too embarrassed to ask.
That said, what if the food being given to me had been my main food for the day? I remember one kid in the class who lived off those snacks, because he didn’t get anything at home. For students receiving free or reduced-rate meals, it’s hard enough accepting help without being made to feel like Oliver Twist, pleading for more gruel because it is the only edible thing on your plate. A 504 Plan provides outside leverage.
But it takes a lot of red tape to weave together a safety net. A typical IHP consists of sections A through O that include a list of participating parties, doctor’s letters, a narrative summary, and fine print. The plan can antagonize school officials by priming them to worry about liability. For most kids, an emergency action plan (EAP) will do—a less formal but still informative document that focuses on crisis moments. The most common one uses a format endorsed by the Food Allergy and Anaphylaxis Network (FAAN) and can be downloaded for free from their website.
One day, years out of school and visiting my mother’s house for coffee, I showed her a copy of an EAP. It included a square for the child’s photo and a checkbox for reaction-exacerbating asthma. Step one described “Treatment,” a range of symptoms matched to a checkable set of options to give epinephrine or antihistamine, with additional space to note the dosages. “Step 2: Emergency Calls” provided a field for a doctor and a field for a parent, with the addendum “Do not hesitate to medicate or take child to a medical facility!” The form offered a place to identify three school staff members trained at using EpiPens or Twinjects, and—in case none of the staff could be located—illustrated instructions on how to administer the injection.
My mother took in the generously sized blanks, the boldface type, the arrows showing which end of the EpiPen to pull off when activating it. She shook her head.
“Yeah, this is all new,” she said. “This would have been nice.”
A primary motivator for these standardized plans was a 1992 study on fatal and near-fatal food-induced anaphylaxis in children and teens, in which it was shown that four out of the six deadly attacks (but none of the seven near fatalities) recorded in the study took place in school. In other words, allergic children are offered
some protection from potentially fatal allergens by the bulwark of a school environment. But once exposure has occurred, the bureaucracy of classroom decision-making (to give Benadryl, or EpiPen? one Benadryl, or two? does the teacher administer the EpiPen, or should the school nurse?) can cost precious minutes and therefore lives. And in fact, all the in-school fatalities were associated with appreciable delays of epinephrine injection. The minimum delay was twenty minutes. On average, seventy-five minutes usually elapsed before an injection occurred.
In Ontario, Canada, the death of thirteen-year-old Sabrina Shannon, who had an allergic reaction to curds on cafeteria French fries and subsequently collapsed in the hall of her high school, was partially attributable to a delay in epinephrine treatment. Her mother, Sara Shannon, became a crusader for laws requiring fixed anaphylactic response plans in schools. This sparked a piece of legislation known as “Sabrina’s Law,” and a wrenching documentary by the same name.
Granted, every child with potential for anaphylaxis should carry epinephrine within immediate reach and be trained to instruct those around them on when and how to use it. But younger kids might not be able to grasp the concept—or might forget all their lessons when panicked for breath. Worse yet, some anaphylactic reactions (as many as 19 percent, according to one study) require two injections before the emergency crews even arrive. Given that an insurance-covered EpiPen costs fifty dollars a pop, and the dose has only a year-long shelf life, to ask every child to carry two is a significant financial burden. There should be an unexpired epinephrine injector in every school’s first aid kit, in a known and unlocked location, that can be used to augment an allergic child’s primary supply.
If there’s one thing becoming more and more obvious, it’s that teachers need the means and the permission to pull the trigger on epinephrine. I know that’s scary. An injection necessitates a trip to the emergency room, whereas the alternate plan is to let the Benadryl-dosed child (who will protest violently that she is fine, as she puffs on her inhaler) sleep it off in the clinic. But the side effects of an EpiPen’s worth of epinephrine are usually no worse than tremor, nausea, and a mild headache. The side effect of anaphylaxis is death.
Even my mother, with all of her experience, sighs over the countless times she should have used my EpiPen and did not.
“You were so lucky,” she says. “We were so lucky.”
• • •
By the time I got to high school, I had become increasingly aware of foods that made no conceptual sense. Cheesecake, for example. Cake should not be cheesy. Cheese should not be caked. Admittedly, I had never tasted cheese. Nor had I ever eaten anything like the spongy, frosting-rich, boxed-mix-plus-egg cakes that populated the parties of my friends. But curdled milk served at room temperature? With cherries on top? This is what dessert would look like on the island of Doctor Moreau.
So when I found myself being herded with a crowd of friends into a restaurant known for its all-cheesecake menu, I knew I was in trouble. We were on a choir trip to New York, where we were booked to sing at Carnegie Hall. My mother’s instructions echoed in my head: Watch for pickpockets. Don’t walk over sidewalk grates in a skirt. Keep those medicines on you at all times.
She should have added Avoid restaurants with a fifteen-dollar-per-person minimum. There wasn’t a single menu item I could eat. I asked for a root beer.
“A root beer float, you mean,” the waiter said.
“No, I can’t have ice cream. Can I just get a root beer? And what brand is it?”
“A and W.”
“Oh.” I was pretty sure A&W’s recipe included egg whites, to make the head frothier. “Just a Coke, then.”
The waiter glared at me over his notepad. “That’s not enough.”
“Lay off her,” Liz said. “Everyone else is ordering.”
“Jeez, mister,” someone else muttered. “You’ll get your money.”
We had the swagger of fifteen-year-olds out on the town. At the Empire State Building, a junior-year tenor had announced that an object dropped from the Observation Deck would gain so much momentum that if it hit a person walking below, it would punch into his skull. We’d pitched our pennies anyway, little Lincoln bombs plummeting toward the sidewalk. We were renegades.
After taking the other ten orders, the waiter jabbed his Bic pen behind his ear and stalked off. I scuffed my shoes back and forth against the checkerboard linoleum. I was the only one who had already changed into the prescribed stage costume of a white button-down shirt, black skirt, and black tights. My purse was stuffed with an EpiPen, an inhaler, Kleenex, and six Benadryl. I had chosen the black purse, hoping the conductor wouldn’t notice it onstage. The odds of a Parmesan ambush at Carnegie Hall were low, but I’d promised my mother.
The waiter came back with ten plates, ten forks, and one Coke with watery ice. When he slammed my glass down, soda slopped onto the table.
“Can I have a napkin?” I asked.
“Get one from your friends,” he said, turning away. “Only plates come out with napkins.”
Once he was gone, my friends fumed at his rudeness. Someone suggested we dine and dash. Someone suggested we talk to the manager. Drunk with power and engorged on cheesecake, my friends decided his punishment: they would stiff him on the tip.
By now it was six o’clock, and we were due back at the hotel in our stage outfits. The two Jens put their money down. “Gotta run and change.” One girl had to go meet her mother, who was chaperoning. The three altos sharing a room headed out. Then the other sopranos followed them. I was the last one at the table.
Our waiter swooped down on the pile of cash. He eyed me, counting out each bill.
“Where’s my tip?”
“Um …” I froze. “I don’t think they wanted to give you one.”
With a loud clatter he swept ten dirty plates into a plastic dish tub. Then he picked up the tub and stormed through the double-hinged doors, cursing in an unidentifiable language. From the kitchen I heard the crash of the tub being thrown to the floor. Only then did I do what I should have done ten minutes before: I ran.
I had always been a careful, obedient child, figuring that my allergies didn’t give me much of a choice. In high school, I was ready to rebel. Teenage rebellion usually involves a sip of beer or a surreptitious make-out session during Days of Thunder. My coup took the form of a spoonful of peas.
I was sitting on the far left end of the L-shaped sectional that anchored our downstairs. For years my regular seat had been the prime real estate on the far right end of the couch. Bigger end table. Close to the window. But my kid sister’s macaroni-and-cheese habit had contaminated that section of furniture; the ghosts of countless fumbled pasta bears past haunted the armrest, residual dairy causing my eyes to water whenever I sat there. I had been forced to relocate.
“I’ve spent years facing the TV from a different angle,” I whined to my mom. “Now my neck feels strained.”
Dinner that night was one of the usual combinations of baked chicken breast, wild rice, and boiled peas. No sauces, no garnishes, Sandra-friendly. As I lifted the obligatory vegetable to my mouth, it occurred to me that I didn’t particularly like peas.
In fact, I hated peas.
I could hate peas!
It was the first time I could remember articulating a dislike of something I’d eaten. I’d grown up thinking of food in terms of two categories—deadly and safe. I had a few favorites, sure (bacon, French fries, artichokes in chicken broth). But outright “dislikes” were a luxury only others could afford.
On the secure shores of my family’s tan shag carpet, I decided I deserved to have dislikes like anyone else. The moratorium on peas would last seven years. Later in life, I’d take to turning down okra, uni, Israeli couscous, and red onions. I admit that cavalierly saying no to something on a menu still thrills me a little.
If only all my problems could have been solved by swapping peas for lima beans. In the course of three years, I had gone from being a cute, eag
er-to-please kid to being a moody lump of greasy hair and sweaty armpits. I rolled my jean shorts up so high that the pocket linings showed. I chewed gum just so I could snap it in sullen comment.
Fifteen was the year we discontinued my allergy shots, after a new round of testing revealed they’d had little impact on my sensitivities. Just what every teenager craves: incontrovertible evidence that she’s been duped by The Man.
“Fourteen goddamn years of goddamn injections and they didn’t do a goddamn thing,” I reported to my friends. Actually, the shots probably kept my environmental allergies from worsening, but such subtleties were lost on me. I had just discovered cynicism, which required modifying sentences with “goddamn” whenever possible.
I turned rude toward any and all doctors. I “forgot” to use my daily inhalers. When chided, I muttered, “It’s my body.”
My mother would pick me up for dentist appointments and ask if I’d brushed my teeth. The answer was always a principled “No.” I figured that if the dentist really needed to know what my teeth looked like, he should see them in their natural state. No playing nice with Crest and Scope.
I was insufferable. I was a teenager.
Life-or-death decisions fall into the hands of a food-allergic adolescent. As when you hand your Volvo keys over to a sixteen-year-old, it’s invariable that accidents, even tragedies, are going to happen. A survey of one registry of food-induced anaphylaxis indicated that 69 percent of fatalities in a given year were victims between the ages of thirteen and twenty-one.
Say a teenager is heading out for a basketball game. He’s wearing mesh shorts and a T-shirt, with his wallet and keys on a chain. He figures, Where would I keep an EpiPen? Besides, I won’t be eating anyway. Then the players get swept along to a postgame pizza party. He’s starved for carbs and surrounded by his buddies, and he doesn’t want to be the weird guy asking if someone made absolutely sure there are no anchovies on the pie. So he thinks, To hell with it, I’ve had pizza before. He takes a bite.
Don't Kill the Birthday Girl Page 3