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.