When you’re sick, eating can be pretty miserable.
In this episode, Miles Griffis talks to writer and artist Aisha Mirza, founder of misery collective and author of misery meals: a crip community anti-cookbook for when eating and cooking is hard. Miles and Aisha discuss the book, how Aisha went from an anti-foodie to a cookbook author, and what it looks like to be in community even from the solitude of your own home.
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RSSLinks mentioned in this episode:
- Buy misery meals (worldwide shipping): https://ko-fi.com/miseryparty
- Sign up for misery’s newsletter: https://miseryparty.substack.com/subscribe
- Follow misery on Instagram: https://www.instagram.com/miseryparty/
- Follow nutritionist Kaysha Thomas on Instagram: https://www.instagram.com/kayshathomas/
- Cooking is terrible by Misha Fletcher
- Depression Cooking by Sonali Menezes
- Cookbooks by Ruby Tandoh
- Research updates
- Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug.
Jump to a specific part of the transcript:
Intro
[Theme music begins]
Melanie Marich: [00:00:00] Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times.
Melanie Marich: And I’m Melanie Marich, the podcast producer for Still Here. [00:00:30]
Miles Griffis: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.
Betsy Ladyzhets: But here at The Sick Times, we’re bringing you the latest news and commentary that matters to the Long COVID community.
Miles Griffis: Without pandemic denial, minimizing, or gaslighting.
[Theme music ends]
Melanie Marich: I love food. It is one of my greatest delights and joys. I grew up in my parents’ Brazilian restaurant, surrounded by delicious foods and smells or eating [00:01:00] midnight crème brûlées that my chef dad made on impulse in these massive batches, or at my favorite pre-journalism job working as a cheesemonger. I’m not a full-on foodie, but I do love a good meal. That’s just my truth.
What is also my truth is that when the person I love and live with became sick with Long COVID, food became such a chore, and chore is putting it nicely. On bad days, it was me crying in the kitchen, too exhausted to think, but too scared that my inability to cook would be the reason that my beloved [00:01:30] wasn’t getting the right nutrients they needed to get better.
It was dark. Some days it still is. So when today’s guest appeared in my email inbox talking about an anti-cookbook for when cooking and eating is hard, I was intrigued, and when I got my hands on the book, I was delighted.
The book is called misery meals: a crip community anti-cookbook for when eating and cooking is hard, and as I told its author, Aisha Mirza, before this interview, reading the book felt like a warm hug.
It’s a compilation of recipes, art, [00:02:00] stories, and resources compiled from mad and disabled queer and trans folks of the global majority. The book is so expansive, so beautifully designed, and so relevant to so many of us in the long COVID community. The book wasn’t made for us specifically, but as many of our experiences and touchpoints overlap with our chronically ill, disabled, neurodivergent brethren, I’m really excited to share this conversation with you guys.
Our co-host Miles interviewed Aisha about the book, their experiences that led them to making it, [00:02:30] and how we can feed ourselves even when we feel like we can’t or when we don’t want to or when food is the last thing on our minds. As always, you can find more info in the episode description, including a link to buy your own copy of Misery Meals, which is now available for international shipping.
Okay, here’s the interview.
Interview with Aisha Mirza
Aisha Mirza: Uh, my name’s Aisha Mirza. I’m a writer and an artist. I’m joining you from East London, where I currently live on a boat, um, and it’s kind of dusk time here in London, so you might [00:03:00] hear some squawking, and that’s the, that’s the ducks just, like, doing their business.
Miles Griffis: Thank you so much for joining us today.
Aisha Mirza: Thanks for having, thanks for having me. I was like, “This might be a bit of a stretch for the Long COVID Podcast, but, you know, I’ll give it a go.”
Miles Griffis: Um, the reason this stuck out is, I mean, long COVID is a disability. We– It is an energy-limiting illness, and you arranged a cookbook or an anti-cookbook, we can talk more about that later, but, uh, organized by Spoons, and I think that is such an important thing for people with long COVID [00:03:30] because it can be so overwhelming to try and put together a good recipes when you are sick and not feeling well.
So when we looked at the cookbook, we noticed that you open it in a pretty surprising way, which is talking about How you are a self-identified, uh, not foodie and have really complicated relationships with food, which I’m sure many people in the chronic illness and disability space can relate to. How did you go from this aversion to food to editing a cookbook?
Aisha Mirza: I know. [00:04:00] It’s weird, actually. I’m not entirely sure. This is actually the second cookbook that I’ve made. I made a much s- like smaller scale one for a partner in the past, which is, which is weird ’cause I haven’t made any other books. I probably should. I guess it’s like food and being comfortable with food and like finding a flow in the kitchen and creating any kind of routine or ritual around food, and I guess by extension, ways of nourishing [00:04:30] myself, has just been a challenge for a long time.
I think when I’m unwell, food is one of the first things to emerge as a problem area, and it can honestly feel impossible to figure out how to do it, how to keep it fairly regular, how to remember. And I suppose over time I was hoping that that would kind of figure itself out, and it’s kind of become clear [00:05:00] as I’m marching through my mid-30s that it’s, it’s, it’s not.
It’s not gonna figure itself… It’s part of who I am and it’s part of how I move through the world. And so I guess I’ve turned towards it, or tried to turn towards it with some curiosity. Um, so it was like a very personal project for me, um, quite self-serving in that way ’cause I was like, “Nothing’s really getting me there.
Let me sort of explore that a bit more.”
Miles Griffis: That’s very cool. So, uh, the book is called Misery Meals, and you also have a collective called Misery. [00:05:30] Can you tell us how Misery came to be?
Aisha Mirza: I started thinking about Misery in 2018. Um, I, I lived in New York for four years and worked in mental health there, and was also part of like the radical mental health movement, which wasn’t so much flourishing in the UK as far as I knew.
So I got really excited about lived experience-led, um, peer support, specifically around mental health. Um, and then I moved back to London [00:06:00] after a very acute episode, which essentially I didn’t have health insurance in New York and, and had to leave to sort myself out. It was the cheapest option. And kind of noticed that while there were so many queer spaces and spaces for queer people of color too, like really blossoming in London, they really relied on a certain type of like- Uh, extroversion, but, like, also there was, like, a quieter, [00:06:30] slower, sadder space that, like, needed to be, um, available, I thought.
And so that’s, that’s kind of where the, where Misery started. And, um, it actually started as a sober club night. It’s now, like, a community interest company, like a legal entity, and we have four core part-time, um, staff. And we have, like, a range of programs. We also have a strand called Misery Medicine, which really [00:07:00] came to life during the lockdowns, um, where I spent a lot of time, as many people did, um, nurturing that relationship with outside and nature and how, and how so much of nature and plants and trees could, could become our friends in this really unique new way that a lot of us hadn’t had to really experience before, especially in a place like London.
So there’s also a piece there around, like, reclaiming, healing, um, and making our own medicines on our own terms. And, [00:07:30] um, whether you wanna do that or not, or whether it’s appropriate for you or not, there’s just something quite empowering, um, and comforting about knowing that the plants that surround us are our friends, whether they’re weeds or, or whatever.
So, um, that’s been a big part of our work too. And then a couple of years ago, we got the grant for Misery Meals, and we were like, “All right, it’s time.” So now we’re, like, a publisher too accidentally.
Miles Griffis: That’s awesome that it kind of just [00:08:00] sort of happened that you got into publishing and, and this book work.
Can you tell us a little bit about the amazing graphics that are in the book? I found it a really incredible part of this project, and it was very eye-catching, and it kinda helped, I think, break down some of these, um, some of these recipes. How did you all sort of decide on that direction for the book?
Aisha Mirza: Yeah, thank you for [00:08:30] naming that. A lot of thought and a tremendous amount of energy went into the design of it, um, which was a bit of a puzzle that we, um, and when I say we, the core team working on this book was myself, um, Mayya Husseini, who was doing production, and, um, Wan Yee Sin, who designed this book, though we all kind of helped with elements of what everyone else was doing, you know.
I realized that design was gonna be a huge part of this book, especially when thinking around [00:09:00] accessibility in the book form, and for a cookbook specifically. And so, yeah, one, one thing that’s just felt quite real for me, but maybe across the board too, was that when you are, like, zero to one spoons, reading a lot can be hard.
It’s, and it can be a deterrent to, like, uh, getting into something. And so we did essentially go really hard with illustration and with trying to create [00:09:30] illustrations of how every single recipe is put together, with the idea that you can glance at it and get a feel and get some inspiration. The book’s been designed in a way where you shouldn’t have to really do, like, a super close read of it.
It’s also kind of a companion and almost like a bit of moral support in the moment, and it was designed so that it is visual enough that you can hopefully flick through, navigate yourself to the kind of spoon level that you might be at, and, um, have a feel for a, [00:10:00] a direction that might feel good.
Something I was really keen on, and when I was thinking over the years of how I’d want this book to come together, there was, like, a little kind of gamified element to it that felt really important, and that has taken form, um, with this flowchart. On page 12 of the book, there’s a fold-out flowchart, and it takes you through, um, a bunch of questions that then take you to the part of the book or the spoon level that, [00:10:30] um, might be best suited for where you’re at.
We actually, um, worked with a kind of radical nutritionist called Kaysha Thomas, who helped us figure out what the right questions were for this flowchart, because it was actually such a puzzle. How to ask, like, what someone feels able to do without also making it sound like one of those forms that you have to fill out when you’re trying to receive, like, disability benefits.
It took a lot, basically. Um, also, like, do you even want to eat? Are you feeling hungry? Are you feeling hungry but you want [00:11:00] to eat? Are you feeling hungry but you don’t wanna eat? So we were, like, really trying to encompass, like, a lot of different states that you might be in with picking this book up. And then we divided the spoon levels from zero to five and gave each spoon level its own mascot This is my favorite, Nelly No Spoons.
Um, and, um, Nelly No Spoons is kind of like a sleeping little fluff. And so once you’ve completed the flowchart, you can, um, [00:11:30] go to the page that is recommended, and there you will be met with your mascot, who will kind of take you through the recipes in that section, um, and show you how to make them.
Miles Griffis: So yeah, to come back to this idea, uh, that you open the book with, food can, you know, be a really fraught topic among many folks.
And obviously here at The Sick Times, we’re thinking a lot about our audience with Long COVID. There are a whole host of ways that Long COVID impacts people, from having big energy limitations, [00:12:00] to gastrointestinal challenges, to losing or changing taste and smell. How would you encourage, uh, listeners and people with Long COVID to engage with this book and, and just food sort of in generally as they, um, you know, understand their new limitations and are sort of, you know, pushed into this, this new body that they now have?
Aisha Mirza: I don’t think I have Long COVID, but something that has come up a lot with, um, friends and peers and people in [00:12:30] community who do, of which there are a lot, um, is first and foremost, I think, a real, like, loneliness and alienation. And maybe ’cause I work mainly in the mental health space, like, that’s what’s coming to me.
And so I feel like, yes, as people are grappling with this, like, change of circumstance and, like, a new way of having to work with the world, I think there’s, like, an immense loneliness that comes with that. Um, and maybe a lot of loss of what was and what [00:13:00] is no longer, espe- especially around friends, community, people who once loved you but aren’t sure how to love you anymore, and then a lot of grief that comes with that.
So I think something we were trying to do with this book was create a form of companionship, which I know is not gonna, like, keep your belly full, but, like, it, it does, it does something, right? In the book, there are a lot of testimonies. Most of the recipes in the book have a little, like, story with them, um, where the people who submitted them have, have just written a paragraph or [00:13:30] so about what that meal means to them, or what it means to them to find it difficult to eat sometimes, what it means to, like, be someone who has less energy than they need to do the sustaining things of life.
And I just think there’s, like, first of all, so much power in that, and a lot of people who’ve fed back about the book so far have said, like, that part really stood out to them and was actually nourishing in a whole other way, like, almost unrelated to food. And so we were hoping that [00:14:00] by offering that, it’s kind of then a gateway to, like, nourishing nourishment.
Because although you may be physically alone at times, there’s, um, there’s, like, a feeling of communal feast with this cookbook that felt really important. And I suppose the other part of that is working to try to, like, quieten down or dismantle the shame that I think is around for a lot of people who might not be able to do things they once [00:14:30] could or whatever it is, and that goes for stuff around f- food as well, I think.
I feel like there was, um, I feel like food culture and writing in general has just been really kind of pretentious for a really long time, is, is how I felt as someone who, like, is slightly not, I’m not driven by, like, making amazing meals necessarily. Like, it’s just not something that came naturally to me or was really high up in my interests [00:15:00] in terms of, like, the things I’m trying to do to survive.
And so with that kind of, like, pretentiousness or assumption that, like, everyone’s a foodie or, like, um, everyone loves to cook, I think there can be some shame when you can’t. You know, it’s something that- is one of the basic needs of, of all of us, right? Being, being fed and being nourished, and if that’s something that you’re struggling to do, that can feel bad.
It can feel like you’re not really functioning [00:15:30] as, like, an adult or, like, whatever it is. Like, whatever stories we tell ourselves, um, sometimes or adopt. Um, and so Again, I feel like this book was just, like, a big offering in opposition to that, to just say, like, you are absolutely fine as you are. A meal can look like so many different things.
Sometimes a meal will be a [00:16:00] smoothie, sometimes it will be a drink that you’ve added electrolytes to, and that’s real and that’s okay. Like, it gets to be yours, and you’re not the only one who’s navigating food in this, in this maybe different way.
Miles Griffis: No, absolutely. Now I’m just very curious of some of your favorite recipes in the book.
Can you tell us some of these favorite recipes and, I guess, yeah, sort of how, how they, how they came to be in the book?
Aisha Mirza: Yes. Um, [00:16:30] so gosh, you know, I don’t even, I don’t actually have a favorite. No one’s asked me to choose. I would say my favorite section is, um, the zero spoon section because, you know, in the last few years there has been really amazing, interesting, nuanced food writing and cookbooks come out.
In the book we shout out Cooking Is Terrible by Misha Fletcher, which was one of the first books of this nature that I found online where I was like, [00:17:00] “Oh my gosh, someone else is thinking about this too.” So this cookbook is, like, in a lineage of other publications that have been exploring this. So there was Depression Cooking Zine by Sonali Menendez, which was, uh, 2022, and then, um, over here we have Ruby Tandoh, who was the Great British Bake Off winner some years ago, um, but then who took, like, a really interesting path into, like, mental health and food and accessibility, and I think publishes, [00:17:30] like, easy read copies of all of her cookbooks and just, like, amazing stuff like that.
That said, they still weren’t basic enough for me, basically. Like, I would, like, really, I was, like, elated to find these resources being made, um, but also they, uh, I, I still felt overwhelmed by them. So I think for me, um, what really stands out in the book is the zero spoon section because it’s just all about drinking.
Um, [00:18:00] and it’s, it’s about, like, creating an emergency bed pack when you do have the spoons to do that, um, so that you have some long shelf life stuff available to you, um, and near your bed for when you truly can’t move. Um, and so we have a really nice illustration of some of the things you can have in there, um- And then the zero spoons c- uh, section continues to have a [00:18:30] recipe, um, from someone called Maz Sheikh, which is sucky cap water, and they’ve written about why they always keep a bottle of water by their bed that has a sucky cap because, um, it’s easier for them to drink while lying down.
Um, and we have My Baby’s Squeezies by, uh, Jessie McLaughlin, which is ano- it is, that is one of my favorites actually, and kind of, uh, talks about how they were a, a parent to a newborn and in crisis and would… [00:19:00] essentially were surviving off of, um, baby food for a while. Um, and then we just like, it, it moves into different things you can put in water, um, to enhan- like to enhance the nutritional value of the drink, but also to support your mood.
Um, teas, um, drinks from around the world like nimbu pani from, um, India, which is essentially like a bit of, um, salt and [00:19:30] lemon in water. Um, again, like getting some electrolytes in, getting a little bit of like flavor, but keeping it really, really low-key and, um, that was very important to me to have something that started at that level and moves up slowly.
So shout out, uh, Nellie No Spoons, definitely my favorite part of the book. Um, and if I was to take you through a page, [00:20:00] uh… oh, wait, I also have to shout out Depression Canapés. So, um, Depression Canapés was a concept that arose while we were thinking about the book, and it was essentially about how to m- make food that’s a little satisfying, that has a little bit of something going on, but essentially without cooking, so it’s about assembling food instead.
Um, and we have a spread in the book that gives you a range of different bases that you might wanna use like maybe a, a banana slice, um, [00:20:30] a biscuit, a date, and then a spread that you might wanna put on top, whether it’s like yogurt, hummus, a chocolate spread, jam, a pâté, and then something to sprinkle on the top.
So there’s like a lot of ideas here around like garlic salt, crushed nuts, chia seeds. Um, and I thought that was really delightful. Um, and it actually, out of everything in the book, is probably the thing that sp- like helped me the most ’cause I just felt [00:21:00] Rather than the doom of like shuffling around in the fridge to just, like, try to put something in my mouth, there was, like, kind of a, a playfulness to the idea of making a depression canape.
Why not? We capped steps at five, so if anything took more than five steps, we didn’t include it. This one has three steps. Um, and then there were a couple of hacks on each page, too, for ways that you can substitute things or, um, um, yeah, do slight [00:21:30] variations on the recipe. And the recipes were collected through a public global call-out for, um, queer and trans people of color all over the world to submit, um, their own misery meal.
And, um, and yeah, they were paid for those submissions, and then they were designed and placed into the part of the book that we felt was most suitable. And people just truly amazed us with, um, their generosity and, [00:22:00] um, the flexibility with which they approached, um, the assignment and, um, just the care as well.
It really felt like Like a kind of crip chorus of people all speaking to each other. Even though we didn’t make the book, um, like we weren’t too prescriptive about the kind of foods or the kind of recipes, people were so, like, generous and flexible in the recipes that they [00:22:30] shared and, like, almost all of them.
I think there’s only one recipe in this book that requires, like, actual meat, for example, ’cause it’s some kind of, like, broth that needs it. But all of the others were, were submitted with so many different substitutions in mind, um, including vegan and plant-based stuff, and I thought that was really beautiful.
Um, yeah.
Miles Griffis: Yeah, I think that’s so important, the idea of these substitutions. When I [00:23:00] was looking through it, um, you know, I was thinking of people with Long COVID and how many, and related diseases, and how you can have, uh, mast cell activation syndrome or, you know, all these different things that impact how you eat, um, and how it changes your relationship with food.
So, so many of these I was like, “Okay, well, I can’t have that, but I could definitely…” Like, this, this concept of the recipe is inspiring me to, um, you know, come up with something else that would work, uh, with this kind [00:23:30] of framework, and sometimes just having that framework is so helpful as you, you know, are looking sort of at a blank page of, of food and trying to determine how to fill it.
Um, yeah. I mean, yeah, thank you so much for coming on to the show with us. Is there anything else that you wanted to talk about?
Aisha Mirza: No, thanks so much for having me.
Melanie Marich: You can find more about Aisha, Misery Collective, the cookbook, and more in our episode description.
Research updates
Melanie Marich: To wrap up today’s episode, here are the latest research updates.
For more information on anything we mention [00:24:00] here, check out our episode description or sign up for The Sick Times weekly newsletter if you haven’t already. That’s where we include the latest in research every week.
Miles Griffis: There’s a new COVID-19 antiviral on the market, Ensitrelvir was just approved by the US Food and Drug Administration as post-exposure prophylaxis, or PEP.
That means it can be taken within 72 hours of a COVID-19 exposure, and clinical trial results show that the drug reduces symptomatic COVID-19 by 67%. This is [00:24:30] pretty big news in the COVID-19 world, so we’ll continue to report on this drug. Please keep us posted with any questions or comments you have about it to editors@thesicktimes.org.
Betsy Ladyzhets: Some people with Long COVID have autoantibodies that attack the body. This is reinforced by a new study in CELL, where researchers transferred antibodies from people who had Long COVID into mice, and then the mice later developed Long COVID-like symptoms, including fatigue, balance issues, pain, and small fiber nerve damage.[00:25:00]
Other similar studies have found similar results. According to the new study’s co-author, Akiko Iwasaki, these findings could mean that Long COVID overlaps with some autoimmune diseases.
Miles Griffis: About one in six people with a documented COVID-19 case developed Long COVID. That’s according to a new study from Massachusetts General Hospital published in JAMA Network Open.
The researchers looked at the electronic health records from nearly 500,000 people with COVID-19 between spring [00:25:30] 2020 and late 2024. They used an algorithm to track new onset chronic symptoms after the infection and identified 75,000 people with suspected Long COVID. That number is double the prevalence rate of previous studies that used a specific diagnostic code for Long COVID.
The researchers also found that Long COVID prevalence increased over time, calling it an, an accumulating health crisis demanding urgent investment.
Betsy Ladyzhets: If you were in the US clinical [00:26:00] trial for Vyvgart, listen up. Scientists at Mount Sinai’s CoRE are conducting a remote blood draw for people who participated in this Long COVID clinical trial.
Specifically, CoRE is taking blood draws of people who received the active treatment in the trial, saw improvements, and are not on any immunotherapies. Findings from those blood draws could potentially support a future clinical trial for the drug, especially since some people in the trial reported significant improvements and demanded more research after the [00:26:30] trial was canceled.
For more info, check out the episode description or the op-ed that we published from trial participants.
Outro
[Theme music begins]
Betsy Ladyzhets: That’s all for this week’s episode.
Miles Griffis: In the meantime, we’ll continue reporting the information that you need.
Betsy Ladyzhets: Solidarity with everyone still here.
Melanie Marich: This podcast and The Sick Times are supported by you.
You can help us keep this work going by donating on our website. Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis. [00:27:00] Our theme song for this episode is The Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece.
I’m Melanie Marich, and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times co-founders. Thanks for listening.
[Theme music ends]
