The Right to Exist
The Right to Exist
I haven’t eaten in six hours. The intense power walk to the end of the Madrid-Barajas Airport alerted me that I was starting to run on empty. And all I had was an apple and two small muffins for the seven-hour plane ride.
“Please let them have something gluten free on the menu,” I thought as I started rifling through the backseat pocket. An air sickness bag, the safety procedure guide and a Spanish version of Sky Mall sat on my lap, but no menu was to be found. My boyfriend flagged down a flight attendant and asked if there was a menu for us to look at the food options.
“Yes, you’re going to get food,” he replied. He had misunderstood our question.
In broken Spanish, I asked him if they had any food sin gluten, without gluten.
“You would have had to make a request for special food orders at least twenty-four hours in advance,” he stated in a condescending tone. Twenty-four hours ago, we just learned that our vacation was suddenly extended after a delay caused us to miss our connecting flight to New York City.
I felt scolded anyway. This sort of interaction is what I always fear when I go out to eat. The fear that I won’t be believed or will be seen as a burden always adds an element of anxiety to most food related excursions.
In the late winter of 2016, after so much time spent in discomfort and pain post eating, I finally decided to see a doctor about my health issues. I was and still am a fierce lover of carbs, but something indicated that my relationship with them might be the root of my problems. I asked my doctor if she would check for some sort of gluten sensitivity. Some blood work and one upper endoscopy later, I was diagnosed with the autoimmune disease known as celiac disease.
This means that my body can’t break down the protein found in gluten. I had severe damage to my small intestines and was not absorbing nutrients from a lot of the food I was eating. This could explain the dramatic weight loss during the past few years. Celiac disease isn’t like other low-risk food allergies. When I eat melon I usually end up with an itchy mouth, but if I pop a Benadryl eventually I will be fine. According to the Celiac Disease Foundation, the list of long-term health conditions caused by not adhering to a gluten free diet include intestinal cancer, epilepsy and infertility. As someone whose anxiety, another common symptom found in people with celiac, manifests itself through obsessing about my physical health, learning these symptoms was terrifying.
How do you explain to a server that you may get cancer if you have any wheat on your plate? Your server doesn’t want to hear that, they’re busy! No, my throat won’t close up like one with a peanut allergy - you probably won’t even see a reaction. But the reaction is still happening inside of me, a slow attack on my body. I remember working at restaurants myself and internally rolling my eyes at some of the dietary restrictions I had to cater to, including gluten free food. I assumed that it was an obnoxious health fad that the person would abandon the following week but was making my life hard in the moment. Now I was the one making people’s lives harder.
Food is supposed to bring people together, but an invite to a friend’s birthday dinner can have the exact opposite effect for me. I’d much rather stay home where I know I can eat everything. I remember going to a party at a friend’s house and the only thing safe for me to eat were potato chips. Going out late also means I should make sure I’m properly fed beforehand because most establishments that cater to gluten free patrons close by eight p.m. A late-night meal usually ends up being french fries from whatever fast food chain is still open. Despite all of these experiences, two years after my diagnosis, I still find myself not always speaking up when it comes to food planning. Gluten free food is expensive, and even a city as diverse as New York doesn’t have gluten free food at every restaurant. Sometimes a majority of the group wants to go to that new fried chicken restaurant. Or a friend’s popular recipe of brownies doesn’t really work with gluten free flour and they’ve never tried making that way before. As much as I want to eat what everyone else in the room is eating, it can be easier to just say nothing.
As the flight attendant returned his attention to other passengers, I leaned my head on my boyfriend’s shoulder and tried to keep it together. As the stress and frustration of not having much to eat started to set in, a woman sitting behind us leaned in between our seats.
“I heard you guys talking, and I don’t know if it would help, but I have this extra granola bar and it says that it’s gluten free.” As she passed me a Kind Bar, my eyes filled with tears. I was touched by her generosity. I thanked her and then pulled my tiny plane blanket over my head to have a good cry.
Traveling is inherently stressful. When a part of your brain is always working on where your next meal is coming from, it makes the experience even more draining. I felt all that stress overtake me in that moment. I’m twenty-five years old and feel as if I don’t know how to feed myself. How did I get so unlucky to develop this terribly inconvenient disease? Why couldn’t they have a few gluten free friendly meals on hand just in case? Why didn’t I plan better for this? The blame always ping-pongs back and forth, between how I should always plan ahead when eating outside of my comfort zone and the world not being a more accommodating place for people with celiac disease.
Traveling is inherently stressful. When a part of your brain is always working on where your next meal is coming from, it makes the experience even more draining. I felt all that stress overtake me in that moment.
I often have to explain to people what celiac disease and gluten is. I don’t mind the teaching opportunity but wonder what would life be like if this information was more common knowledge. What if schools had a better curriculum to educate students on the role of food in our society? Not just about allergies and autoimmune diseases, but also about eating disorders and the mental harm their victims are going through or what it’s like to live in an urban food desert or on food stamps. No two people have the same food habits. An awareness of the different types of relationships with food can help us become more empathetic towards those who struggle.
As I remove the blanket, I’m no better than when I went underneath. I eat my apple, my muffins and newly acquired Kind Bar, and wait anxiously to land and get some real food. At JFK, I bypass the small airport delis, already knowing there was nothing for me, and booked it to Chipotle for a rice bowl.
In the couple months since this experience, I’ve taken notice of the times I do speak up about gluten free options when eating out. Sometimes they say no, and the fear of this response overtakes me, then passes and I move on. But sometimes there is a gluten free option; sometimes servers are very accommodating or even have celiac disease themselves and make sure my food is prepared safely. Like the woman on the plane, someone may be there ready to help. These moments reinforce an idea that I struggle with in more than one aspect of my life; I am allowed to exist. I am allowed to have needs and voice them. They may not always be met, but they are still valid. I am allowed to request gluten free alternatives in public spaces or just with friends. It may not be the airline’s fault they didn’t have these options for me, but it’s not my fault either.
But hopefully in the near future, there will be gluten free options available everywhere and it won’t be entirely on the individual alone to adjust their world so that they may eat.