#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

When I go to the doctor one of the first questions I ask about an issue, is always:

“So, is this normal?”

I know what I’m really asking. I’m asking whether or not whatever is going on is healthy. I know that. But that’s not what I ask. I ask if it’s normal. As if it’s the same thing. But it’s not and I know this.

The way I eat is definitely not “normal” (grain-free/gluten-free, dairy-free, cane sugar-free, and soy-free) but it sure is healthy (for me). I’m much healthier than I was when I was eating a more “normal” diet. That is been obvious. And so this concept of “normal not being necessarily healthy” should be pretty clear to me. And yet, I guess it’s not, because when I go to the doctor, I don’t ask if something is healthy. I ask if it’s normal.

When I ask if something is normal, I’m asking whether or not it is common. And how common it is has absolutely nothing to do with health.

So what’s going one here? What’s with the importance of normalcy? Why do I care so much whether or not “it’s normal” to have reactions to cane sugar? Why would thinking “everyone can eat soy but me.” and “But it’s supposed to be this magical health food!” stop me from taking my own reactions to it seriously? Why is this such a quagmire?

One of the clearest places that I see this conflation between what’s “normal” and what’s “healthy” is with farts. I have gotten into quite a few arguments about this: whether or not farting a lot is a sign of digestive distress or if it’s not a sign of anything at all. I’ve had (at this point) this conversation so often that I did some research on it. And this is what I have found:

The average and therefore normal amount to fart is around 14 times a day. To be clear, farting in and of itself isn’t necessarily unhealthy according to wikipedia (http://en.wikipedia.org/wiki/Flatulence), or Dr. Oz:

But according to Dr. Ben Kim over at http://chetday.com/digestiongas.htm super smelly farts can be a sign that you aren’t digesting your food properly (which would be unhealthy). And that there is a “toxin formation occurring inside your gut from rotting of incompletely digested food, and some of these toxins are entering your blood stream and contributing to the development of long term disease.”

So, depending on what kind of farts you’re pushing out into the world, your very normal 14 daily farts might be a sign of digestive distress and possible sickness, and therefore are not healthy at all.

Now, I know that this may be a fine line to be climbing all over, but the point is: just because everyone else has the same problem, or that it’s a common problem, that doesn’t mean that it’s not a problem.

#nerdsunite

click here to follow Lillian on the twittah!

and check out her blog over yonder!

#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

I will never be “normal”.

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:

#nerdsunite

click here to follow Lillian on the twittah!

and check out her blog over yonder!

#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

A friend of mine just got tested for food allergies and found out all at once that he’s allergic to something like 12 different foods. He's allergic to more things than I am (which is intense. I’m allergic to 4 basic staples in the US diet: Gluten/grains, dairy, cane sugar, and soy and that's been challenging enough). He called me in a panic last week asking me what he should do now. He was on his way into Boston, was feeling peckish, and couldn’t figure out what he could eat. I looked over his tests, directed him to a restaurant and told him that I also have a few recipes I’ve made on my show, Lillian’s Test Kitchen, that should work for him.

And he said: “Yeah... You know that skill, where you take recipes and turn them into food? I don’t have that.” It took all my self control in that moment to not just blurt out: “Well then you’re going to STARVE.”

Because that’s the reality when you have a ton of food allergies. You just can’t eat out the way you used to unless you want to get sick all the time. You can’t even eat the way you used to. Your whole life changes in that moment. If you want to feel good and be healthy but you also don’t want things to be different. You want them to be the same. You want to be able to just go out to eat with your friends. Let them pick the place and just show up. Share an appetizer. Get a beer. Try some of your friend’s dish. Order something because it sounds interesting and not worry about what's in it. Let them taste a bit of your food without worrying about the what their fork has touched on their plate. Eat some bread from the bread basket. You want to be able to be casual and normal around food. You don’t want to be wracked with anxiety watching everyone’s fork and piece of bread to make sure that they don’t come near your plate. It’s exhausting. And you can get angry about it. I did for a while. But it won’t do you any good. In fact, it’ll just make your life harder.

My friend with all the new allergies is a vegan, but he said that that’s too hard now, at least now while he’s adjusting to all of this. Maybe he’ll be able to be a vegetarian, but if he doesn’t learn how to cook for himself, that’ll be almost impossible in a sustainable, stay healthy kind of way. So unless he develops that skill where you take a recipe and turn it into food, he’s in some serious trouble.

But I didn’t say that to him. I bit my tongue. I murmured something supportive, told him that I'm here for him, and gave him a list of questions to ask servers (what kind of oil do they cook with, if there’s something fried, is there a designated fryer? Don’t trust condiments, sauces or salad dressing) told him that the manager or the chef will probably come over to talk to him, but to still double check his food when it comes to the table, just in case something gets into it that it shouldn’t be there. I told him that he can call me anytime if he needs some guidance or help, because I remember what it was like finding out that I couldn’t eat the foods I had grown up eating. It was terrifying and disorienting. I can’t tell you how many times I’ve cried in public when a waiter brought me yet another salad with cheese and croutons in it. Or when everything on the menu, even the vegetables, were breaded, deep fried, smothered in melted cheese, and I’m starving.

If I had been smart and finished the elimination diet test when everything started, I also would have found out all of my allergies at once. But I’m telling you, that if it had gone down like that for me, I would have crawled into a fetal position and cried. For a long, long time. So I feel a lot of compassion for him, for what he’s going through right now.

As it was, it was still a really, really difficult transition. These allergens are sneaky and seem to be hidden everywhere. In vinegar (gluten and sometimes sugar), soy sauce (soy obviously, but also gluten), in almost every single processed food ever (all of them).The list goes on and on. And I’m still finding new places where they are hiding. But emotionally there was a lot going on as well. For starters, I was mourning the loss of the comfort foods that I had grown up with which is a painful process in and of itself.

And I was saying goodbye to a certain kind of freedom. The freedom to not worry about it. I was saying goodbye to the certainty that I would be able to eat somewhere without planning it all out, researching the place and calling ahead of time. That freedom to pick up and go. Now, every trip starts with me packing and planning at least a few days ahead. Because I need to make food for the flight, and maybe something extra for my meals once I get there.

When I was in Austin for SXSW this year I went the first 36 hours without eating a real meal because I hadn’t gotten it together to research any restaurants. It was my own stupid fault. I should have just freakin’ googled it. But I was overwhelmed by being there and couldn’t get it together.

But having to worry about food and my food allergies; with consequences that are so serious, that if the meal doesn’t go correctly, I will be sick for up to 2 weeks, has forced me to learn how to take care of myself in a much more proactive way. I can't afford to be a pushover anymore because I always have to make sure that I am taken care of. For me, there just isn't any other option. And that means that I worry less about the other stuff. I worry less about being an inconvenience and maybe even a little annoying. Because yes, of course I'm going to drive the server at the restaurant crazy asking questions and “just checking again” and “I’m sorry, but I just want to make sure...” But I’ve had too much experience at this point getting poisoned to care. I mean, I’m polite about it, but I’m not going to put myself in a difficult or dangerous position anymore just because it’s inconvenient to do anything else. In a way, it’s wildly liberating. I almost think that having food allergies should be a feminist class that everyone is are forced to take in middle school. Maybe it could be called: “My needs are valid, fuck off.” Or something cooler. I’m not sure, the name is a work in progress.

Having food allergies has taught me and is still teaching me how to take care of myself. It’s an great/tedious/helpful/character building exercise in thinking through my own needs. I’m forced to really think through the day every day: “what I want to do? I’m going to get hungry, how and where am I going to get something safe (and delicious) to eat?” I mean, the truth is that I would love to be cool and let the night take me where it will, fly by the seat of my pants, and end up in unknown and fantastic places (much like Jen Friel does, like, all the time). And that is possible for me, I mean, I like the fantastic unknown as much as the next girl, but you better believe I will have planned ahead and have at least part of an irish soda bread in my purse.

LOVElillian

#nerdsunite

click here to follow Lillian on the twittah!

and check out her blog over yonder!

#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

My name is Lillian Medville and I’m allergic to gluten/grains, dairy, cane sugar, and soy. I’ve struggled with these four food allergies for years. It’s taken me more or less six years to figure out that I had them, and then another 10 years to figure them all out.

But even once I figured them all out, managing myself around food didn’t really become any easier. Rather than a source of comfort and a social glue, food had become something that kept me a part from my friends and family. I always needed to have a special meal. And even with a special meal, I didn’t feel comfortable eating with everyone else, partially because it made my difference so obvious (which I wanted to avoid) and partially because by this point, after years of food being so complicated and punishing, I so much anxiety around food, that the experience was rarely enjoyable anyway. 

At a certain point (about a year and a half ago). I just couldn’t take it anymore. I was tired of seeing food as the enemy. I was tired of feeling deprived, always being around food that I couldn’t eat and wanting what I shouldn’t have. And I was very tired of always getting sick. So I bit the bullet and started making my own food. I realized, that if I wanted to eat it, I’d have to make it. And that single thought changed everything.

But starting to cook was scary. I had to bulk order all these new ingredients (like blanched almond flour and coconut flour) sight unseen. And all of these other very specific ingredients that I, of course, could never get all in one place. Following recipes for the first time can be dicey even without restrictions, and I looked around for people who were doing a cooking show with my kind of ingredients, but it just don’t exist. The gluten-free people all use flours that I can’t use. The vegans use tons of soy and gluten. The raw people don’t use ovens. 

I had gone to NYUʼs Tisch School of the Arts for acting, and I had been auditioning here and there and working in small independent films, but was tired of waiting for someone else to choose me. I wanted to do something of my own. And I was getting more and more interested in learning how to feed myself in a way that actually felt good for the first time. So I bought a camera, read the manual obsessively for a month, asked a friend to shoot with me, and started my own show.

Now let me be clear, this was all new to me. I didn’t know how to edit video. I didn’t know anything about producing a show or social networking or marketing, but I started anyway. I decided to call it Lillian's Test Kitchen, not only because it is an experiment in cooking, but also because it is an experiment in lots of things, from dealing with the emotional issues that come up with food and food allergies, to asking health questions I don’t know the answers to, to finding new unknown bands to feature on my mini episodes, to finding out if coconut sugar and agave are interchangeable in that pancake recipe.

I'm trying to be open to everything the world offers me as long as it doesn't make me unhappy and I'm not allergic to it. I have found the experience to be challenging, rewarding, humbling, and scary. But I guess that’s normal when the point is to try things for the first time and not know what I’m doing or what is going to happen next. But that, along with being healthy, and finding joy with food and life even with dietary restrictions is what my show is all about. 

LOVElillian

#nerdsunite

click here to follow Lillian on the twittah!

and check out her blog over yonder!