In this week’s episode, both of our storytellers grapple with what they can and can’t eat.

Part 1: Danielle Meinert struggles to eat anything other than cheese pizza, Easy Mac and toast with butter.

Danielle Meinert is a writer and recovery advocate for Avoidant/Restrictive Food Intake Disorder (ARFID). She lives with her husband and adopted mini poodles in Atlanta, Georgia. She loves food.

Part 2: Ellis Ballard has life-threatening food allergies, which makes eating, drinking and living life challenging.

Ellis Ballard is a creative producer, editor, director and prolific maker of creative projects. They produce the True Story London Podcast which features stories from London's vibrant live storytelling community and in-depth interviews with the storytellers. Ellis also co-facilitates True Story London's DRAFT storytelling workshops, and works with performers to direct and craft live comedy and theatre projects. Ellis's new podcast 'The Secret Podcast' is an outlet for some more unconventional audio creations that have willed their way into existence despite considerable efforts to suppress them.

Episode Transcript

Part 1

I'm eight years old, standing outside between my therapist's office and a fountain, warming a penny in my hands. Eyes closed, I whisper in my head so no one can hear aloud, “I wish by the time I'm 30, a real grownup, that I could eat anything.”

Eight years prior, I was born half deaf and I could eat anything. My parents called me the garbage disposal because I'd grab anything I could get my little grubby hands on. By the time I was two, I got an ear surgery to address the first condition I was born with. A doctor pried my mouth open, drilled a hole in the roof, and drained the fluid that led to my ears.

On the way home, in the back seat, I held my hands over my ears. Open, close, open, grinning at this new sense I'd gained access to. I could hear, but I couldn't eat.

My parents spooned my favorites into my mouth. Broccoli fluff, mustard, creamed corn, because I was a toddler, but if it managed to make its way in, it immediately fell out. I developed this gag reflex for just about every food and smell near me. Just about anything that I could try to eat before or that I loved to eat before read as inedible to me.

I don't remember any of this. I was about two years old. It's right before the age where little kids start forming long‑term memories, but I do recall the way I ate for the next 27 years. For example, again, eight years old, back at that therapist's office, sitting at her giant desk staring at a chicken finger, she's begging me to take a single bite. And if I do, she's promising the reward of a reliable plain animal cracker. I can't eat the chicken.

At 16, a teenager, I go to a birthday party and I go straight for the cheese pizza, absolutely thrilled to see a happy safe food there. I bite into it and there's a surprise pepperoni right underneath of the cheese pizza. Sorry to do that to you all. And I could not finish the pizza. I gagged. I looked around. I felt just shame in my chest and I left early. I was a teenager who couldn't eat.

This stuck with me. In college, I was choosing my major based on what I thought my condition could handle. In‑person sales that requires making deals and eating meals with other people, out of the question. English major, though, I'll be unemployable. Perfect. I literally won't have co‑workers to comment on why I'm eating the same Easy Mac every day for lunch. It's a plan.

I'd grown up with this condition called ARFID, A‑R‑F‑I‑D. It stands for Avoidant/Restrictive Food Intake Disorder, which is the only acronym I'll share with you here tonight, and it can manifest in many ways. But for me, it meant that almost all food was disgusting. I could smell a fresh, ripe orange on the other side of the room and think that we'd left out last month's trash to rot.

This made me feel like my brain was configured wrong. Like, the wires that are supposed to properly transmit information to tell you about food were just clumped together, snipped out, and thrown away. And when you feel like your brain is configured wrong, you tend to hide from the world.

I knew I couldn't live like this. I didn't want to live like this. So as an adult, I took myself back to therapy, just regular talk therapy this time. I thought maybe I could talk my way out of my condition or convince myself not to have an eating disorder. But it turns out my expectations were a little bit misaligned. Did have some great therapists who really helped me emotionally cope with what was going on but needed a different tactic.

So I tried exposure therapy, similar to when I was eight years old, but I'm a grownup now. I've got a grownup brain. Maybe I can do this differently. Maybe I can eat a walnut. I can, if I convince myself for about three weeks to work up to it. And can I keep it in my diet? No, but look, I ate it. I tried the walnut and then I went to youtube.com.

I thought, “Maybe I'll just try some at‑home hypnotherapy.” It didn't work. But anything is worth a shot. That was earnestly my perspective.

A year‑and‑a‑half ago, settled at home after eating butter toast for dinner, laying in bed, eyes heavy from a long day at work, just like cycling through Netflix, letting it tell me what I'm going to watch tonight. And then I heard this narrator on this show say, "Psychedelic‑assisted therapy can help eating disorder patients recover in as little as as a single session.”

What? I sit up in bed and I Google “psychedelic‑assisted therapy ARFID”. Psychedelic shrooms, mushrooms? For people who are scared of them. I literally cannot move fast enough. I am stoked on the idea. There's nothing online or in this documentary about my particular condition, but it did not matter to me. Taking psilocybin‑containing mushrooms on purpose to say goodbye to my eating disorder, this could be the solution.

This is a really important time to describe to you all that I was a narc growing up. In high school, I overheard my neighbor telling his friend that, after school, he was going to buy weed. And empowered with a whole childhood community of misinformation, absolutely terrified for his health and safety, I immediately called my mommy.

But I thought, “How wild! Taking psilocybin‑containing mushrooms that can rewire your brain on purpose to say goodbye to your eating disorder. Anything is worth a shot.”

So I signed myself up for an at‑home, undirected, unofficial clinical trial of sorts led by my sweet husband, almost a doctor in creative writing. And I knew I needed to feel prepared, so I read everything I could about every clinical trial that had been done in the US, in the world, on using psychedelics to help people heal from tons of conditions. PTSD, depression, other eating disorders. It's going in my notebook.

I'm making a guide. What am I going to do the night before, the day of? Hopefully, eat some food. What about after that? And the weeks after that? I also made a guide for my sweet, almost‑doctor‑in‑creative writing husband, which was a little bit shorter. It said, “Please make me food the day that we go on this trip. And, also, please make sure I don't fall off a ledge. Thank you so much.”

Then, the night before, we go grocery shopping. We grab the big cart, budget in hand. We walk inside the grocery store. I'm real tempted to make a beeline straight for the frozen pizza section, like I do every time when I go to the grocery store alone, but this time, we go to the produce section. We walk past some nectarines that smell like trash, but I pick one up. It's in the cart.

Suddenly, we're picking up a dozen fresh new‑to‑me foods that I've never considered eating before, but have always wanted to. Bell peppers, green onions, tofu, why not? Avocados, they're all in the cart. They're going home with us.

The next morning, I wake up and I feel like it's my birthday. I don't know if this will work, but I believe that it will. I'm nervous. I'm scared. I'm looking through my notes again. Again, psilocybin creates new neural pathways in the brain. This is what you want to do. You want a new brain. You can do it. Time to get out the coffee grinder, use it on my 3.5 grams of psilocybin mushrooms. I'm now a drug experimenter. I'm ready to do this.

I grind up the 3.5 grams in the coffee grinder. I dump it in a cup. I fill it with water. I spoon it around. I smell it. You might be asking, “How is she going to drink mushroom tea?” I was also asking that.

So I pace and I delay and I turn on Carly Rae Jepsen to try to feel a little more pumped up and confident. And I find myself my favorite Swiss Miss hot chocolate mix and I dump it in the mushroom water. Does it mask the taste? No, but I drink it. I chug it. It's the biggest food exposure therapy of my life. I have to do it.

It's in my stomach. The mushrooms are in my stomach. And so I wait.

10 minutes later, I'm on a boat floating in the air and the horizon is shifting the walls of my kitchen. And the sun is brighter than it's ever been in my living room, looking at the ceiling light. So I know that it is time to walk over to the couch, put on an eye mask to close my eyes and turn on the Johns Hopkins psychedelic therapy psilocybin Spotify playlist made public for this very moment and look inside my brain.

And in the corner, I see this sweet, friendly, scared, fluffy, purple monster, kindly wearing a name tag for me. ARFID. It's really sweet of him.

I was high at this point, obviously, but not so high that I didn't remember what I was here to do. I remembered from my reading this advice that said if you see a creature in your brain, an entity, say hello. Greet it. See what you can learn from this part of your brain that's here to teach you something.

And so I said, okay. “Hi. ARFID, right? Yeah? Okay. Nice to meet you. See you. Thank you for keeping me safe, but I don't need you like that anymore. I love you. Goodbye.”

I push my eye mask onto my forehead. I look at my sweet, almost‑doctor husband and I say, "I'd like that nectarine, please."

He grabs my hand, he walks me to the kitchen, sits me on the bench. I'm high. He grabs a nectarine, runs it under the water of the sink, puts it on the counter, gently slices into it with a knife, picks up the piece, walks it back over to me on the bench, puts it in my hands. I'm holding a nectarine and I'm toying with it, like a baby learning solids for the first time. It's wet and soft and juicy and it smells like a sweet flower, and it tastes like sunshine on a cold day after a wind just passed by.

Food can do this? I am stoked. I eat everything I can. A juicy purple plum. Food, definitely food, and delicious. A kale salad with lemon juice and goat cheese. Food, neutral, maybe great. I'm not so sure yet, but it's food. A raw slice of avocado? I finally understand why my peers can't afford houses. I am eating food.

There's this tiny voice in the back of my head every time that says, “Danielle, are you so sure you want to do this? Are you and your purple, fluffy monster friend, ARFID, going to be all right? Can you handle it?”

“Yes, I can.” I eat the food and, every time, the voice disappears. It's just food.

The next day, sober and nervous, my usual state, I don't know if I can keep up the progress. So I go to the freezer and take out my favorite frozen pizza, put it in the toaster oven. When it's time to eat it, I reflexively start taking off the three pieces of very generous basil the frozen‑pizza company give us.

I stop myself and I smell it. And I eat the basil on the pizza for the first time. It tastes like herby oil harvested for royalty, but it's for me.

The next day, I think maybe I can make it 10% more challenging than what I did yesterday. And I'm licking the bowl clean from my first Caesar salad. By the end of the week, I'm eating raw sushi and pig's feet and trying 10 flavors of hot sauce on literally anything I can try. I love food. I am alive.

The past year‑and‑a‑half, I have been learning how to eat food as an adult. The years in your childhood that you get to experience learning how food interacts with your taste buds and your brain and your body, I get that as an adult now with adult consciousness and adult therapy skills, and that is a real joy.

And I'd like to talk to you about oranges. They're like Gushers, except good. And have you ever heard of sandwiches? You can put literally anything on a sandwich. Don't let anyone tell you otherwise.

I'm alive. I'm eating for the first time. And I understand what it's like to take in this sense without fear or being terrified. And every moment, I have the ability to try to unite people through food because, it turns out, most of us don't have an easy time with eating.

I was born without one sense, my hearing. But when I gained that, I lost another. But now I'm 30 and I eat everything.

Thanks.

Part 2

So, in August of 2018, I boarded my first ever international flight to Gothenburg in Sweden. You see, growing up, my parents never took us on holiday abroad. This is mainly because I have a number of life‑threatening food allergies, primarily to eggs and to nuts. This makes eating food prepared anywhere outside of my safe home environment a risk, and a risk my parents, understandably, would rarely take.

Growing up in the late '90s, early 2000s, safe and inclusive implementation of food allergy policy wasn't very prevalent. And on a daily basis, I'd be exposed to teachers, peers, other parents, shop staff, restaurant staff, some medical professionals and even members of my own extended family who didn't know how to keep me both safe and included.

I became accustomed to hearing things like, "Well, can't you just scrape it off the plate? Surely, you can eat a little bit of it.” And, “You're just going to have to sit out of all of these lessons, Ellis."

And also some general ridicule. "Well, aren't you a delicate little flower?"

It's worth noting that many of these attitudes are very much still around today. Often used as like a quirky plot point in films and TV shows. Allergies and their full traumatic effects are rarely depicted accurately.

Culturally, I've noticed that many people are more comfortable mocking food allergies than they are accommodating them. But for me, it's a daily risk. If I eat something I'm allergic to, even in trace amounts, I can go into anaphylactic shock. That's where my airways close up completely and I can suffocate to death.

Thanks to my parents' caution, I never experienced anaphylaxis as a child. I did have some more minor reactions. Coincidentally, always to food that was delicious for some reason, but never anaphylaxis as I ended up vomiting the allergen up in the end.

However, growing into adolescence, my allergies began to affect me in other ways. I'd learned to read ingredients lists and clean surfaces, avoid cross‑contact, but with teenagehood came new challenges, like going to parties, going around friends' houses, sleepovers, group holidays, restaurants, dates, romance, that thing where you put your mouth on someone else's mouth and move your tongue around. Kissing, that's it. For these issues, there was, to me, no informed support, so I had to slowly, carefully work out how to navigate them myself.

In secondary school, I found myself becoming somebody's boyfriend. Thank you. You nearly applauded and I saw you. No, too late! You chickened out.

But, yeah, so I was a teenager. It was an anxious time, anyway, regardless of medical considerations. But having heard terrifying reports of people dying after being kissed by someone who'd eaten an allergen, this felt like a very, very dangerous game to play.

So, leant against the history block wall, I nervously told my new girlfriend that because of my food allergies, we possibly maybe, probably maybe, possibly maybe shouldn't kiss on the lips.

This wasn't a rule imposed by some authority figure. This was just my own attempt to stay safe. And coming out of my mouth, it felt like such a shameful and pathetic request. But she said it was okay.

The next day, as I came out of my form room, my new girlfriend asked me for a kiss on the lips. She said, "I know you said no kissing, but just a small one."

And I took this to mean that my request had been ridiculous. I mean, of course it was. What was the point of me as a boyfriend if we didn't kiss? That's how I felt.

So, from that point on, we kissed goodbye on the lips every day, just a small one. I loved the intimacy, but I could never actually enjoy the kiss itself, conscious of trying to keep my mouth sealed so as not to let any poisons in, whilst also trying to look like a cool casual boyfriend who kisses people all the time without fearing for their life. Then when she'd go out of sight, I'd try and find a sink at the nearest opportunity and wash my mouth out.

When we eventually broke up a whole three weeks later, an absolute eternity in the world of school relationships, I wasn't heartbroken. I was relieved. And this became a pattern for most independent, food‑adjacent activities as I grew up.

Because of the way I was born, fitting in felt hampered somehow, and the message I was receiving was that most of these things are unsafe and off limits. So, growing into early adulthood, I kept myself safe the only way that felt possible to me, by simply not taking part in most things even tangentially related to food.

Other people, it seemed, couldn't be trusted to accommodate me, and constantly being vigilant was exhausting.

This lasted until about the mid‑2010s when I'd found a new sense of adult self‑esteem, a new group of caring friends who looked out for me, and new up‑to‑date internet resources. To the point where I felt like there were some things that I just didn't want to miss out on anymore, and one of those was travel.

So, after doing the work of attaining a passport and then doing a trial self‑catering weekend in Paris, I felt just about confident enough to fly on an airplane, stay in a hotel and eat at a restaurant, like what normal people did.

With my brother and a friend, I flew to Sweden for a holiday and to see my favorite band, King Gizzard and the Lizard Wizard play a show.

A nod from that guy? Gizzard fan? Yeah. Favorite album?

[background conversation]

You're a fan, but not a big a fan to have heard an album. Sorry, I put you on the… He's on live? We'll talk after. It's cool. Sorry for putting you on this one.

This flight to Sweden, it was on the face of a holiday, but more so it was a test to myself. Could I actually do this? Was this even possible?

Our first day in Gothenburg, the weather was absolutely beautiful. I absolutely loved it. As I sat down at the hotel restaurant in this, like, outdoor‑y bit where the sun was glaring down, it was so beautiful. I triple‑checked my dinner order with them and then I looked around, and I noticed that I felt quite a lot less like an alien here, possibly for the first time in a long while.

These buildings, the hotel, the restaurant, the pretty café on the corner, though in the past would have seemed like 2D film set facades that I wasn't allowed in, I noticed these were inhabitable. I could be here. I had a right to be here.

I sipped on a cocktail and I noted that, if I was careful, as long as I was vigilant, these places weren't completely out of bounds. I could do this.

The cocktail was delicious by the way. It was delicious. Oh, no. The cocktail was delicious. My stomach began to turn and I felt a thickness inside my throat.

I ran to the toilets and the door was code locked. So then I ran straight back to a member of staff who gave me the code and then I ran straight back to the toilets again, where I immediately began vomiting up more vomit than I've ever vomited in my life. And when I came back up for air, I noticed that I couldn't breathe in through my nose. It was like a cold turned up to 11. Air simply would not go in.

Taking gasps of breath between the vomiting through my mouth, I decided it was best not to stay in a vomit‑filled toilet cubicle. I moved straight back into the hotel restaurant where the staff told me they may have put egg white in my drink

After some more vomiting, an ambulance ride, some paramedic aid, some more vomiting, some gasping for air and an exhausted Uber ride back, I eventually… Seven‑hour stay in hospital, did I mention that? Seven‑hour stay in hospital, more vomiting, gasping for air, I returned to the hotel mostly recovered.

The most surprising thing to me about that whole ordeal was that I found it kind of fun. Whizzing around in a Swedish ambulance through a hospital and talking to Swedish paramedics about a secret egg in my fancy cocktail. Yes, it was a life‑or‑death situation, but, holy moly, did I feel alive.

Living with food allergies is hard work. There's emotional, social, organizational, and physical labor involved that most people simply don't see or understand. But I really, really, really try not to let it stop me doing the things that I really, really want to do anymore. I try not to stop me living in both senses of the word.

And I certainly didn't let it stop me two days later from having the time of my life in a mosh pit. with 500 other King Gizzard and the Lizard Wizard fans.

That's where you were. I thought I recognized your face.

That should be the ending of the story, structurally. It lands very well. But it's not. I'm very much still in the middle of this. I don't want to give the impression that it's all positive mindset. Believe in yourself. You can do it. Everything's okay. It's not. It's really hard every single day for all the reasons I've said here today, and 100 more.

But I have learned that I don't need to face these difficulties alone, I don't need to stay silent when I'm suffering and I don't need to minimize my additional needs for other people's comfort, because it's not just about my attitude, it's down to everyone around me to strive to be inclusive as well, even when it seems difficult or inconvenient.

I'm not a delicate little flower that could fall apart at any moment and you shouldn't avoid trying to accommodate me just because you're scared that I might. It's the people who practice inquiry, empathy and action who keep me the safest and the healthiest and the happiest I can possibly be, and I'll try to be that for other people too.

Thank you very much, everybody.