I am hoping all of you are reading this from safe, snuggly blanket burritos, because it has become apparent that a giant Snow Golem has decided to go crazy and unleash a metric butt load of snow on parts of the United States. And for those of you in other countries that are also dreadfully cold at this time of year, I hope you are well burrito-ed, too. The only thing better than a blanket burrito is eating a real burrito while engulfed in a blanket one.
If you haven’t noticed based on my constant mention of food and food related ideas, I absolutely love food. Unfortunately, food does not love me; therefore, it’s a bit of a complex relationship we share.
My diet growing up was a delicious array. I ate mainly Austrian, German and Hungarian food at home with my Austrian grandparents, not counting Thursdays in which the Red Baron graced us with his pizza presence. Due to the fact that I was raised half Muslim and Half Catholic because my mother converted to Islam in college,her friends were mostly Muslims from all over the world . One of her friends was African-American and cooked a mix of American and Arab dishes, while another couple were Indian and Pakistani, which meant they regularly filled me with samosa and biryani. On Eid al-Fitr, we would have lively celebrations at the city fairgrounds where there was a sea of homemade food. Dishes from many different Arab countries, Chinese food, Malay food, Indian food, and of course, you cannot forget Halaal Soul food. Because of the neighboorhood I lived in, I was also exposed to Vietnamese, Filipino and Mexican cusines as well. My childhood was horrible in a number of ways, but the food and culture I was surrounded by is by far one of my favorite things about my past. And best of all, I had not one food allergy. Despite my many other illnesses, the only allergies I had were to plants, dust and cats, and I generally tried not to eat any of those.
And then, when I was fifteen, I had my first episode of anaphylactic shock from eating an apple, and I nearly died. Suddenly, I was deathly allergic to apples, pears, and all things birch.
So, I had to be a little more careful and avoid apples. Not a big deal, right? I wasn’t particularly crushed by the fact that I could not longer eat apples, however I was slightly perturbed that my allergist told me that anaphylactic shock could happen to me again, and I now had to carry around an Epi-Pen. I went approximately eight months without an anaphylactic episode.
And then, it happened again.
I was consistently being terrorized by my own body. The episodes began to come every 3 to 4 months, and my list of allergens grew as quickly as Jack’s beanstalk. Every anaphylactic episode was worse than the previous, each one coming faster, with more hives, more pain, and more swelling, which meant I had less time to breath with each event. My doctor’s best advice was to adhere to my list of things I could not eat, and hope for the best.
After my high school graduation and my eighteenth birthday, my mother decided that my present for both would be to go to one of my favorite places in California; The Beach Boardwalk in Santa Cruz. One of my closest friends at the time, Marques, went with me, and we had a fantastic time. After a full day of sunshine, salted air, and mildly nauseating rides, we went to a diner to replenish ourselves before driving back down the mountain. At this point, though I had to be more picky, I was still able to eat at any restaurant. I ordered a cheap plain steak with mashed potatoes and veggies, which was something I ate many times at restaurants. I took my first few bites, unaware that those bites would be the catalyst that threw me into my now extremely complicated life.
After the third bite, I felt sick to my stomach, so I politely excused myself and went to the bathroom. I sat in the stall, sick and nauseous, but nothing happened, so I went back to my table. I took another bite of my food, and the moment the food entered my body, my nausea got worse. I began to hear a ringing in my ears, the kind of ringing one often hears in movies and shows right after a bomb goes off. I began to tremble, and felt like my skin was burning. I ran to the bathroom and tried to throw up, and I couldn’t. I scrambled for words to try explain what was happening to my friend and mother, but it was impossible to communicate. I felt as if I had no control over my body whatsoever, was horrifically ill, and absolutely doomed. I thought to myself, “I have just graduated. I just turned 18. And now, I am going to die in Santa Cruz.” I was quickly taken out of the restaurant and put into the back of our car, and as Marques held my hand, I continued to violently shake as we drove the windy road back home.
Not long after this episode it became the norm for me to get sick every time I ate, no matter what I ate. If it wasn’t an episode of severe nausea, tinnitus, and confusion, it would be anaphylaxis. I went to several doctors who were all puzzled, who resorted to testing me for every disease, disorder and syndrome possible. I’m honestly surprised I had any blood left in my body at all. Long story short (my diagnosis story is for another post because it is unfortunately more complex than it should have been), I was diagnosed with severe anemia and malnutrition.
And then I was diagnosed with Celiac Disease.
I find it incredible that if asked I most likely would not be able to tell you what I ate this morning for breakfast. But I remember, with impressive clarity, the last meal I had before my life was turned upside down. My family had gone in the summer to BJ’s Brewery in honor of my grandmother’s birthday. I ate a buffalo chicken sandwich, french fries, and part of my grandmother’s birthday Pazookie. After lunch, I went home and collapsed on the couch, unable to move, because my body was so worn, tired, and sick, that the simple task of going out to eat with my family exhausted me as if I had just completed a triathlon. At 18 years old, I was bone thin, with pale skin, dark, sunken eyes, and the inability to function at even 1/4 the capacity of an average 18 year old. I felt as if I was almost dead, and while this feeling had been titled Celiac Disease, Anemia, and Malnutrition, no one could tell me how to make it stop.
Painstakingly and slowly, once I figured out how to treat my illness and eat right despite my 13 allergies and autoimmune intestinal disease, I got better. I went from having panic attacks at every restaurant my family insisted I try to eat at, to cooking beautiful and fresh homemade meals. Just as I remember the last “old normal” meal I had, I also remember my first “new normal” meal. It was a plate of nachos with tortilla chips, refried beans, soy cheese, lettuce, and olives. At the time I could not eat dairy or tomatoes either, but damn it, those were great fucking nachos, and they were the first meal I had in nearly a year that didn’t threaten my life or cause my body to fall apart. When I was 22, the anaphylaxis finally stopped. In seven years, I had 16 episodes. Each episode could have killed me. I am extremely glad they all failed.
It is true that the main reason we eat should be for sustenance. That would make life much easier than it actually is. In reality, food is not just nourishment. It is how people share love, culture, and experiences together. It’s a reason for everyone to come together. I do not mind the fact that my disease and allergies make it so that I have to cook 99.9% of the food I eat because I cannot eat at most restaurants. It doesn’t bother me that I many times sit in a restaurant surrounded by people eating while I have nothing in front of me, because even a glass of water may contain something that would land me in an Emergency Room.
The main thing that bothers me about my disease, aside from the fact that I have an awful disease to begin with, is that I have to miss out on what it means to experience food. When I moved to Saint Louis, many friends wanted to take me out to experience classic Saint Louis foods, such as Gooey Butter Cake or what many here claim to be mind-blowingly great barbecue. There are also many days that I feel furious at the fact that I do not have the privilege of simply “picking something up” when I get home after a long day, because there is nowhere safe for me to eat outside of my own kitchen. No matter how sick or tired I am, if I don’t have something at home, I have no choice but to cook, for if I do not, the other parts of my disease come out to play, and make me even more ill.
There are many days when I think back to my childhood and how privileged I was to be surrounded by so many different cultures that came along with so many beautiful kinds of foods. And yes, it makes me sad. However, despite my love for food, it is never worth the consequences that come with dismissing my restrictions. I am often asked if I “cheat” and eat the foods that I am not allowed to have once in a while. Some people with allergies or Celiac Disease can, but I cannot. Most of my allergies are truly life threatening, and I am the most Celiac Celiac one may ever meet, as one of my favorite doctors said. It has been proven that all it takes is 1/64 of a teaspoon of gluten to infect a Celiac. While that may seem impossible, as a Celiac, I can guarantee it really does only take that little amount to send me over the edge. I have eaten something that I had checked a thousand times over, or even made myself, and still ended up with massive purple blisters, tinnitus, nausea, vomiting, and confusion. Despite my affinity for delicious foods, if I have to chose between anaphylaxis, a Celiac reaction, or having to be a bit different than everyone else, I will happily choose the latter, and put on my apron.
While this all may sound like quite the bummer, some truly wonderful qualities have come from the battle between my love of food and my now not so new found dietary restrictions. When I first got sick, I remember my mother telling me soon after my diagnosis, “you better learn how to cook, because I will not be cooking for you.” While my cooking skills may have been cultivated out of desperation rather than passion, I went from cooking whatever would not kill me to not only rekindling my love for food, but intensifying it.
Now, not only am I passionate about what I eat, I am passionate about how I create what I eat. I am getting better at making affordable, safe, and delicious meals with every flip of my spatula. When my transition from allergy-free to allergy-filled started, I was apathetic towards food. I didn’t care anymore, because I felt as if my body betrayed me with every bite I took. I was constantly hungry with no appetite to vanquish the hole in my stomach. No matter what, there are still a few days that I feel nauseous, and I will always have to battle the symptoms of my Celiac Disease along with the rest of my diseases and illnesses. But if I am going to fight, I am happy to say I will at least be eating food that I take pride in making, that is healthy, and that tastes fantastic.
I may not be “normal,” or be able to do many things that most people don’t even give a second thought to, like dining out. But I have become healthier, a fantastic cook, and most importantly, I can now make spectacular nachos. The proof is in the picture above.
I’m Queen of the world, I bump into things,
I spin around in circles.
And I’m singing, and I’m singing I’m singing,
Why can’t I stay like this?
Dear God, Oh, let me be young.
Let me stay, please. Oh let me stay like this.
~Ida Maria – Queen of the World