#NerdsUnite: With love from Lillian & her food allergies
<editorsnote> Nerds, meet my buddy Lillian. She and I met at SXSW this year where she gave me this EPIC STRAW COWBOY HAT!!! I swear, I heart it so much it hurts. Either way, Lillian is a big food nerd with oodles and oodles of food allergies. She's here to talk about her life, love, and all things through her two sometimes four eyes. I only have one more thing left to say ... HIT IT LILLIAN!!! </editorsnote>
#TalkNerdyToMeLover's @lilstestkitchen
This is heartbreaking. Even though I know that “normal” is boring. And “normal” is easy to find. And I am a super interesting unique snowflake! This fact breaks my heart.
I eat weird food that no one has heard of. And I get really sick if I eat the food that everyone has heard of. And to many people, that makes me weird. Heck, even to me that makes me weird. The things that I grew up expecting to be a part of my everyday life: pizza, beer, gum, bread, ice cream, cheese, butter, cheeseburgers, Italian food, Chinese food, gummy beers, fried foods, (to name a few) none of these things can be in my life if I want to be a healthy person. And so I will never get a pizza delivered to my house and eat it with friends. I will never get a ice cold beer at a bar (although they are making more and more gluten-free beers, so maybe I’ll try one. One of these days). I will never be able to go to an Italian bakery and order a cannoli. I will never be able to eat at a rest stop when I take a break from a road trip. In fact, I will never be able to not think about food. Every day, I have to build my life around it. Make sure that I have the right kind of food (for me). And if I don’t have it on hand, I have to make sure that I have access to it.
And I’m not telling you this so you feel sorry for me (please don’t), or so that you think that I’m a whiny baby (I swear I’m not). I’m telling you this because this is just how it is. Do I resent it sometimes? Do I wish that I could just not think about it sometimes? Of course I do. I want to be normal, just like everyone else does. I feel frustrated that I need to focus on my health like it’s my job (because it is). But then I get over myself. I get over my spoiled attitude. Because really, it’s simple:
I’m really, really lucky.
I don’t need surgery or chemo or any crazy drugs to stay well. All I need is the right food. And that is INSANE. I mean, how simple is that? When I eat right (again, for me) that is the difference between health and sickness. And not in the: “if I live off of McDonald’s I’m killing myself slowly” -kind of way. But in the: “If I eat the wrong food, I will have a reaction and be really sick for the next 12 days.” -kind of way. I don’t need a miracle drug. I don’t even need a pharmacy. I just need to not eat food that is poisonous. I’m really, really lucky.
But I still have the lingering desire to be “normal”. To do normal things like get an ice cream cone in the summer. It’s such a small, inconsequential thing and yet so it looms so large for me when my friends and I are at the beach and everyone can get one but me. But that’s just not going to happen. I am what I am. I accept myself. I’ll bring my own snacks, and make myself some ice cream when I get home.
The truth is that I’ve felt like I’m a little odd and don’t fit in my entire life. So it can’t just be about the food allergies. The food allergies are just what makes my oddness so obvious. I can’t hide it anymore. I need to accept it and let my freak flag fly. If I want to be healthy, it’s officially now my only option.
So, I stopped fighting it. I’m not even sure how it happened. I do know that I was tired of wishing I could be different than I am. So maybe it was just exhaustion. Either way, once I fully accepted that this is my life, it started to change. I stopped trying to hide it from others by only eating alone, or by taking unnecessary risks and crossing my fingers that it would all work out. And instead of letting my fear and shame keep me isolated, I started reaching out to others. I started asking for help and support from my friends and family. And when I ran into something I didn’t know how to manage, I asked people who know more than me about living well with food allergies. And as I learned more and became curious about the connection between food, joy, community, and how to have the best life possible within the restrictions I that have, I began to build a community of people that have been helping me do just that.
This is the thing:
I did I lot of stupid things when I was 13. I believe this is common. I’m pretty sure that one of the least controversial statements I can make is that being in middle school is terrible. It’s the pits. No one’s at their best when they are 13. We do dumb things and we’re mean to others who don’t deserve it. I was no exception. But the one smart thing that I did is this: I found my people. My friends were the ones who played punk rock (I sang. I did Joan Jett covers and wrote terrible poetry I tried to turn in to lyrics. Don’t ask to see them. You will never see them). We banded together around our shared awkwardness and our love of music. We did Battle of the Bands in our home town, and open mic nights in the city. It was exhilarating to be good at something together. It felt safe.
Those years were wonderful and absolutely, completely terrible. I wouldn’t repeat that time for all the money in the world. And even though we were all 13 and stupid, I learned a valuable lesson then that is still helping me enormously now:
Find. Your. People.
So, you can’t eat gluten? Find some other people who can’t either. Have dinner parties. Throw game nights where everyone can eat safely. You’d be surprised how quickly a connection can be forged over a shared love of a thing or a shared intolerance of a thing. And it’s not just about food. For instance, I’ve made a lot of friends since I’ve moved to Cambridge through playing Ultimate Frisbee. The initial thing that draws us together is that we all love to play, but it turns out that Ultimate tends to attracts certain kind of people: really smart, nice people who love competition, silliness, and fun. And guess who else loves competition, silliness, fun and fancies herself reasonably smart and nice? That’s right, ME.
Once you find the people who have similar interests and who get you. People you want to learn from and who feel good to be around, you cease to be weird. What you are creating is a “new normal”. This is super important. It’s not just important in middle school, it’s important always.
Seek out the ones who understand you and appreciate what you have to offer. Not the ones who tell you how crazy you are. Seek out the people who have been there before and can help guide you through the thicket. Find people you want to learn from and most importantly, find people it feels good to be with.
Finding a community of people who are going through similar things has been crucial to my happiness. It’s been intensely stabilizing to be able to compare notes with someone about what is happening and talk about digestive or thyroid issues, or anything and everything else. The time that I have spent feeling misunderstood and alone was an unnecessary waste of time. I’m not alone. And while there’s no way that my everyday life would ever be considered normal, and there’s probably no way that I will ever be considered normal either. That’s okay. My friends don’t care. They’re weirdos too. Just like me.
Case in point: