And Two Years Later…Ruminations on Purim, Food, and Other Stuffs

I started this blog two years ago yesterday. Time flies, huh?

I remember going to the allergist for the first time two years ago, getting my test results, and freaking out that Purim, the Jewish holiday that involves not only a meal but an exchange of food gifts (imagine Halloween + Thanksgiving) was days away, and I didn’t know how to eat. A friend of mine and I went to a high-end kosher restaurant. I ordered off the menu and got mildly sick, which made sense given the state of shock my body was in then. Eating was a chore, figuring out what to eat was hard. I clung to my list of allergies at all times, fearful I’d forget something. Things got worse before they got better, and I resorted to a diet of eating the same foods only three times a week and eating nothing — NOTHING — that was prepared by someone other than me or a friend I could truly trust. No packaged or processed foods. 700-900 calories on a good day.

I don’t know how I did it.

Today, for instance, I ate chips, cheese, chocolate chips, soda, matzah, pasta, and canned beans. All foods that were off limits back then (I also ate other food today, don’t fret). I hate to say and am thrilled to say I took that all for granted. It’s become natural to me, again, to eat certain packaged foods. I’ve learned to count in my head (as the three times a week rule still applies). I don’t have a calendar, I just go with my gut, which usually knows when to stop.

I think about how far I’ve come, and what’s next. On Tuesday, I begin a treatment called Xolair. It’s complicated, and in the interest of not spreading misinformation because I’m a blogger not a doctor, I implore you to visit their website and consult your own physician before trusting me. But basically, there’s a chance Xolair can help mitigate my food allergies. There are risks involved (anaphylaxis among them) and it may not do anything at all, but if it works, I may be able to eat some foods I’m allergic to, or at least cross-contaminate with them.

Two years later…and I’m doing something I didn’t think I could: I’m getting better. Or at least trying to.

But I’m also terrified, I won’t lie. I’m terrified of the following:

1. Anaphylaxis. It’s a risk, and I just don’t want to experience it. I’m already on steroids to cope with pollen allergies, and I just want to get back to normal and sleep better and not have a near-death experience that incapacitates me. I’m trying to remember that this risk of anaphylaxis is okay because I’ll be at the doctor’s office, and that every time I eat food I’m somewhat at risk, especially outside of my own home, especially processed food. Every time I go to the grocery store, I’m at risk. So, why am I more afraid knowing on Tuesday there’s a new kind of risk? If anything, its safer. But I think it’s the same reason I don’t get the flu shot. I usually get fever and flu-like symptoms from vaccines, so the idea of scheduling the flu always seems sillier than taking my chances with the actual thing. This is like that, only flu = anaphylaxis. But, I’ll have medical care. Don’t be scared, Cindy.

2. The treatment not working. What a let down that will be. I can see the light at the end of the tunnel and what if it’s not there? Science will improve, surely, and this isn’t my last chance, but right now my eggs are in this one basket and I am very scared that it’ll be for nothing. Can I live this way forever? Yes. But knowing there’s a teeny tiny chance I don’t have to? I don’t want that chance to be taken away.

3. The treatment working. What is the world like without food allergies? What if I could eat fish? What if I counted at catered events? What if I didn’t have to lug 4 epipens with me everywhere I went? What if I didn’t see kids with sticky fingers and get terrified of them touching me? What if people think that since this treatment worked, allergies aren’t real? What if they go away and come back? My whole paradigm might shift and it sounds extraordinary but it’s also like waking up one day and realizing you don’t speak the same language anymore. That the world you live in is at once the same and totally different. It might be AMAZING. I hope it is. But it’s scary, too. Will I become a binge eater? Will I like kale? More importantly, will I lose my sensitivity to others? I never want to eat nuts on an airplane. But if I can eat like a normal person, will I forget the tricks of the trade that keep my former peers safe? I have a sixth sense now. I’m like a food mentalist, tracking motions of foods and eating behaviours. Will that go away when I don’t have to care? And if so, will that jeopardize the people around me and the advocacy I’ve begun to treat as second nature?

All of these fears have occupied my headspace for months. I have found ways to talk myself out of each one. They even largely contradict each other. But they are swimming in the back of my mind.

Two years ago, I was terrified I’d never adjust to a new diet and a new set of rules and weekly food challenges. Now, I’m given the chance to not only go back to before that — the days of carefully eating out, of having 20 allergies instead of 50 — but to a place I’ve never been. I can do this.

Maybe next Purim, I will be able to partake in any feast. I will be able to give and receive Mishloach Manot baskets of food without fear. I’m lucky — this year and last, my friends and family went above and beyond to include me in the holiday — my parents had a friend bake me food I can eat, my friend hosted a feast I could partake in, and friends gave me unconventional food baskets tailored to my diet in the nicest ways. I feel bad wanting more, hoping that next year it will be easier on me and on them, because I’ve already been given so much and treated with such generosity. And yet…I’m excited.  I’m excited to not have to be an exception or a hindrance or even noticeably different.

These last two years have been rough but I’ve settled in. I’ve learned a lot about strength, food, friendship, family — not in that order — and it feels at once like no time has passed and like I’ve lived this way forever. So whatever’s next…whichever fear is realized…I know I can face it.

New York Times: Can a Radical New Treatment Save Children With Severe Food Allergies?

This New York Times article was shared with me by a number of friends and family members (thank you, guys!).

It explores a new trial that aims to desensitize children with severe food allergies by feeding them tiny amounts of the allergen daily until they can tolerate a little bit of the allergens. It’s not black and white in terms of how it works, it’s not a quick cure, it doesn’t work for everyone, and it needs to be seriously maintained (eating the allergen every. single. day. in controlled amounts to ensure that you don’t get sensitive again — I don’t know if eating one peanut every day, but not more, is better than never eating a peanut again; both seem stressful and I’m already used to the latter).

It’s an interesting article, and for the kids for whom it works, I couldn’t be happier.

But no, it will not work for me, not yet. Because I am an adult without asthma and with many non-common allergens. So before we all start cheering that there’s a cure — there may be a cure for my future children if they are so afflicted — the science and the research is not there for me, not yet.

Still, the article was incredibly meaningful to me. I cried a few times from certain passages that I’d like to share with you. I don’t cry about my allergies often — I do my best to stay sunny, positive, and excited — but since the cottonseed oil incident, I’ve been quite frustrated with my body and many of the people around me who don’t “get it.” And then I remember how kind it is of my body to have a) survived and b) not been in anaphylactic shock of that nature ever before even though I’m 26, and how kind many of the people in my life are and how much they do get it. Re-enter sunshine, etc…but some things just still hit super close to home:

Food allergies are a peculiar disease, because most of the time the child is not sick — indeed, she may be bursting with health — but is in omnipresent danger. Statistically the chance of dying is slight. Although the number of emergency-room visits for anaphylaxis caused by food has gone up significantly in the past decade — to as many as 90,000 in a year — only 100 to 200 people die (although statistics are difficult to collect because such deaths are often coded as cardiac arrest). Even for a severely allergic child like Tessa, the mortality rate is estimated at roughly 1 in 1,000, because parents of such children tend to be extremely careful. But food allergies amplify a kind of fear every parent experiences — of a child dashing suddenly into the street and, just like that, being gone. Your child is always playing near a precipice that is visible only to you: you may be able to keep her from falling off, but you can never move her away from the edge.

Like a preacher, can I get an AMEN? I am not sick. I do not like being asked “How are you feeling?” on a constant basis. I am feeling fine 99% of the time. If I’m not eating an allergen or around an airborne allergen, or within a week of an anaphylactic attack, I am feeling just like you. I am not sick, I am not getting better every day, I am healthy and robust and alive and I don’t want to be treated like a patient. But I am in omnipresent danger. That’s the best phrase I’ve ever heard to describe this. At any moment, I can become sick. If you eat a salad and I happen by and it’s the wrong moment, I will get sick. I cannot control that. I cannot control where there is food and who is eating it and how my body reacts to it. Unless I live in a bubble – which I will not – I will always be in danger of dying. It’s unlikely, per the statistics above – but it’s a possibility. It’s analogous to driving on a road where you are the only sober driver and everyone else is a drunk driver. You might be a good enough driver to navigate the freeway free-for-all. But you might not be, and every time you get into a car in this drunk driving parallel universe, which is every second of every day, you have a chance of dying and there ain’t nothing you can do about it. I walk along a steep and rocky cliff. And it’s a cliff that is absolutely invisible to everyone around me except the few people who have been around me long enough to get it and care. Because it is invisible, people don’t believe in it, and they sometimes purposely push you to the edge of it (by asking you to touch food, by throwing food at you, by hiding food in your food without telling you to test you) and sometimes they accidentally knock into you and don’t understand why you’ve fallen, and don’t offer the hand to pull you up. (This happens to me a lot. People know that if they eat salad around me I will get sick, and still do it, and then get angry when I am either sick or ask them to stop eating salad). To put it differently: I have an invisible disability. You cannot see my wheelchair. It doesn’t mean I don’t deserve a ramp.

Early one evening, I gave him a nibble of Havarti — which I chose because it somehow struck me as particularly innocent. Immediately he began to fuss and rub his eyes. I stepped into the bathroom to get him some eye drops; when I returned a few seconds later, I almost didn’t recognize him. It was like a moment in a fairy tale when a child is transformed into a beast: his face was swollen and covered with scaly red splotches, and his eyes looked small and sunken. We ripped off his clothes and saw that horrible scales were spreading down his torso. He began to wheeze and gasp for breath. We threw him in the car and drove to the hospital, a few minutes away.

“Next time,” the E.R. doctor told us, “just call 9-1-1.”

Next time? I thought, staring at him with horror. What kind of parents do you think we are? There will never be a next time. But there was: a next time and a time after that and a time after that.

It doesn’t matter how careful you try to be. It doesn’t matter how responsible you try to be. There will always be a next time, and a time after that, and a time after that. My nurse said to me this past Tuesday when I left work in the middle of the day to get some epi because my throat started closing and swelling when I ate my lunch after being exposed to a coworker’s salad: “Next time, let’s give you the junior epi, since you handle that dose better.” I said, “I don’t want a next time.” She said, “Ok, but next time, we’re going to give you the junior epi.” I persisted, “But I don’t want a next time.” (I’m not the world’s most agreeable patient). She replied, “Right, but still, next time, we’re going to give you the junior epi. Actually, next time give it to yourself and then come here. Don’t wait like this again.” I said, “I don’t want this to happen again.” (Okay, maybe I’m downright annoying). She said, “You’re cute. It will.” And left the room. She’s not wrong. I am adorable, and I will have more allergy attacks. Such is my lot in life.

Kieran began treatment last March, the way all the children in the trials begin, by verifying his allergies through a “food challenge,” in which just enough of the food is given to provoke a small reaction. His first challenge was to cashew — a nut we had been told he was allergic to based on blood work but which he had never actually eaten. I knew that Nadeau had done more than a thousand food challenges and rarely had to use an EpiPen, but I still felt sick with dread. He began at one milligram (1/360 of a cashew) and then, an hour later, a larger dose. After a few more doses, I was beginning to wonder if he actually had a cashew allergy. Then he began to cry and flail his arms, as if he had been dropped overboard and was trying to keep from drowning. One by one over the next 20 minutes, the maximum doses of different medications failed to halt the hideous metamorphosis, and they had to use the EpiPen.

Kieran’s food challenges are slightly different than mine because he’s a child, and come on, “Breakfast with Cindy and Dr. E” is it’s own little show, but some things are the same.  Like when I have my food challenges, and everything is going dandy until it’s not. The above bolded sentence is exactly how I responded to avocado at first. Totally fine, maybe some faces here and there, and then boom. “I don’t feel good, I don’t want any, I’m done,” I whined and pushed it away and got some treatment. I felt like I was drowning but like Dory, I just kept swimming, and asking questions, and pushing the damn food away. If, dear readers, you ever see me angrily thrust food away from me the way you would push a person blocking the subway doors, make sure I take Benadryl. I might be in denial, but that is a sure sign I’m having trouble.

But profound change is profoundly unsettling. Tessa lost a defining aspect of her identity. Would she not be special anymore? Would she get less of her mom’s attention? Tessa still wouldn’t eat any of the food that was formerly unsafe at parties or at school. While Tessa told a few close friends about the treatment, she was reluctant to reveal it more widely. When I asked her why, she pursed her lips and studied her nails. Was she afraid that it would make people doubt the severity of her former allergies? “Yeah,” she said without looking up.

I am terrified that someday I will be able to eat lettuce. I am terrified, because I know I can’t eat it now, but if in ten years from now there is an adult cure and I can eat it, people will think I’m a liar. They will think I am mentally ill. I will think I was mentally ill. I will think I wasted years of my life. I know it’s not true, I know things get cured, but this goes back to the invisibility of it all. If you have an invisible disease and it suddenly goes away, and you were the only person to see it in the first instance, why should anyone believe you had it in the first place? How do you pick yourself back up from the loss of an identity? And it’s an identity not by choice, but by mere fact that every time anyone socializes around food with you, you have to mention your allergies to keep from dying, and since people tend to interact around food, when people interact with you that’s what they know. I am “Cindy, the girl with all the allergies.” I had a short period where I wasn’t that, but in certain times I have to be, and now is one of those times. If I were to become “Cindy, the girl who doesn’t have food allergies anymore but who made us not eat salad around her when she did have them,” I could almost hear the eyes rolling, hear the minds thinking “what a c***,” hear the skepticism, and hear the judgement. And I can just hear the little kid who isn’t cured yet getting made fun of because people think he’s lying because they think I was lying. Tessa has a huge weight on her shoulders — she’s the kid who is teaching her peers about food allergies. And now they are getting a mixed message, and among other things, poor Tessa doesn’t want to be responsible for the death of a little kid who wasn’t as lucky in the trial as she was. Because she knows better. And she knows most other people don’t.

The thought that his treatment serves the larger purpose of the trial seems to help him to get through it. In the fall, he was scheduled for a procedure in which a camera is slid down his throat to photograph his stomach to see if medication had been effective. When Justine told him it would have to be postponed because he had a cold, he said, “But I have to do it to help the research for other kids, right?”

Justine was startled: she had never told him that. “I don’t know where he comes from,” she said. “He is very focused on helping other kids through his hardship.”

I’m not in a trial, but I do keep this blog and speak up about my allergies so that the next generation won’t have to. So that the kids who don’t know what allergies are like beyond their peanut-free schools and birthday parties have a resource for handling the less-friendly workplace sphere. So that the kids who aren’t born yet don’t have to watch their parents fight for peanut-free birthday parties. So that people will recognize that this is a reality. I log this and I write this and I’ve made it my identity so that I can survive and get through it but also because I want to help the other kids. Because as much as I like the “specialness” of my doctor saying, “I’ve never seen anyone react that fast, that severely, to that little of an allergen” or “You may have broken a record for the most severe positives on a scratch test in the least amount of time!” it makes me feel alone. And I know I’m not, and I want whoever my compatriots are to know that they aren’t, either. And if I can raise awareness in the meantime, and minimize the invisibility of the cliff, then maybe it will all prove worthwhile.