Episode 2 — Austin Puca: Trust, Community Care, and Living with Lupus
In this episode, Charlie talks with health equity advocate and systems strategist Austin Puca about living with lupus, chronic illness, and the everyday negotiations of being in a body you’re constantly learning how to live in. From avoiding the sun and navigating flares, to food, fatigue, trust, and care, this is a generous, funny, and free-flowing conversation between two friends. Austin also shares what it means to show up for one another through diagnosis and uncertainty — including being a steady source of care and knowledge when Charlie was first diagnosed with lupus — as together they explore community care, interdependence, and what futures shaped by sick and disabled wisdom can look, sound, and feel like.
Learn more about Austin:
Instagram: @likethecityintexas
Watch the full episode:
Topics we discuss:
Living with lupus and chronic illness
Bodies, time, and change
Trust, communication, and being believed
Community care and interdependence
Food, cooking, and nourishment during flares
Imagining futures led by sick and disabled people
Episode 2 Transcript:
Charlie: Hey everyone, I'm Charlie Moses, founder of Sick Futures Collective and host of the Future is Sick podcast. And today I am joined by someone whose work and worldview I so deeply admire, Austin Puca. Austin is a health equity advocate and system strategist. She has over 16 years of experience across health and human services, victims advocacy, and supportive housing. Austin lives with chronic illness and brings her professional expertise and lived experience into literally everything that she does. She is just such an amazing person, and I am so, so excited that she is here with us today. We're gonna talk about chronic illness. We're gonna talk about systems. We're gonna talk about care infrastructure and what it means to build futures that really honor the complexity of this whole situation. So, without further ado, let's get into it. Here's Austin.
Charlie: Yeah well, hello. Welcome.
Austin: Hello.
Charlie: Thanks for being on the Future is sick podcast.
Austin: Thanks for having me.
Charlie: Yeah, I'm so excited that you're here. Before we get into it, would you introduce yourself? Name, pronouns, where you're from, what you do?
Austin: Yeah, Austin Puca, she/her pronouns. Where are you from is always a question that gets me. I'm a military brat. So I was born in Kansas. Everyone's like, what? They don't expect that, but I lived all over. And I live in Tucson, AZ now. And I moved to Tucson from Denver. So, I'm a woman of the world.
Charlie: Yeah. No, I had no idea you were born in Kansas.
Austin: I know. That's wild, huh? I think you could drop me right off… I wouldn't know I was from Kansas either, probably. But what I do. I work in human services. I help communities try to help the people in their communities – is probably the best way to say that. The fancy name for it is, I guess, I'm a federal technical assistance provider, but who wants to say that?
Charlie: It's super fancy, though. I think, you know, well, gosh, yeah, thinking about our work and how the definitions that get globbed onto those things that we do or have to do, and then I guess the other question is what all you like to do outside of that space?
Austin: Yeah, well, I will say that I feel like the work that I do is work that I have to do, but it's work that I do want to do. I think it's work that probably everybody should have to do. They just don't. What I like to do on top of that. I like art… in any medium. Music playing all the time. I play music. I like to draw. I like to paint. I like to read. I grew up dancing. So, I like to watch people dance. I like to sit in parks and watch people hold hands. Like, I just… I like to be outside. I really love cooking. Yeah. I like hanging out with my kiddos.
Charlie: Yeah. Tell tell me about your family a little bit. I know you've got two kids, yeah?
Austin: I do. I have two daughters, 13 and 19. They're lovely. They're hilarious – really smart, really compassionate. And I have a husband. He's a therapist and, like, an extreme sports guy. So I for fun I also like to get nervous at watching other people do extreme sports. Yeah. He's from the East Coast, so that's a neat thing.
Charlie: That's a vibe.
Austin: Yeah.
Charlie: Yeah, is it like squirrel suit extreme sports level?
Austin: Uh, it's like snowboarding, downhill mountainbiking, wakeboarding. If there's something that you could like launch yourself off into the space he wants to do it.
Charlie: Yeah, no totally nerve-wracking.
Austin: Yeah, motorcycles – all the things. Uhuh.
Charlie: My like, one motorcycle spill I took… I feel like there's a point where you're doing extreme things and you get hurt, and that's when you know if you're going to continue doing them or not.
Austin: Yes.
Charlie: And I'm like, yeah, I got back up on that motorcycle and was like, “Woo, we're going to keep going!”
Austin: Yeah. Well, you know, things happen and then what is time anymore?.. But maybe it was three years ago now. That someone hit my husband and my youngest daughter cuz they were on the motorcycle. She loves the motorcycle and they have all the gear on, so they're fine. Does not change getting the scariest call ever. Ripped our bike in half.
Charlie: Oh my god.
Austin: Emma still’s like, "Yeah, I'm getting on the motorcycle."
Charlie: Oh my god.
Austin: That's her personality. When she was very small, I'd find her like on top of the refrigerator. We have really high ceilings in our house, like trying to wake her way… like "Aren't you scared?" She'd say, "I'm never scared untill I am,” which is like a quote to live by.
Charlie: I was about to say I really like that. Yeah, it's so interesting with just the different personalities, cuz I was that as a kid and my parents were like, "What do we do with you?" So, they put me in gymnastics and were like, "Go climb on other things, please."
Austin: Yeah.
Charlie: Yeah.
Austin: That's where the gymnastics came from.
Charlie: Yeah.
Austin: Got to hop it out. My parents put me in track and basketball and soccer. Like, run it out.
Charlie: Mhm, like please, by all means
Austin: There's a field. Go run in it.
Charlie: Well, and I know… so I want to talk a bit about… because I know you have lupus. I have lupus, and you were like my lupus doula when I first got diagnosed and could just pick your brain about it. But how has your relationship to physical activity or just kind of physicality in general shifted? How do you do it now?
Austin: Yeah, well so my lupus diagnosis was well, I mean, I think like any diagnosis, it's like what? Because there's normally something going on.
Charlie: Yeah.
Austin: And then finally, you have an answer, which is not even an answer. It's just more confusion. But growing up, part of my parents making me become super active is I used to complain that I was always, I was like old lady or something, like it hurts! And as a little kid, they told my mother I had junior rheumatoid arthritis and to move my muscles and do things with my muscles to support my joints, yada yada. So I kind of grew up pushing through pain in a way that we expect people that present as able-bodied and whatnot to just do. Anyway, so then fast forward, I was pregnant with my first daughter and that went… not very well. Hindsight, folks with lupus have a hard time when they are pregnant, but I went into labor 18 weeks. I got airlifted. Like, my relationship with my body, as a diagnosis, has come forth.. has had to take on so many different understandings as different parts of using my body are impacted that I didn't expect. So you know, I was still dancing and thought, well, I can't, my balance is off and all these weird things (turns out I was pregnant, so that explains it), but that pregnancy, and you know, your body's already attacking itself, and then you're trying to grow a person who's also like ripping from you. That.. that was intense. And right after having my daughter, I still didn't know I had lupus. I tried to have another child, and that was not successful. And then I was pregnant with my third daughter, and they give the wildest names to women's issues. They told me I had an “incompetent cervix.” That's a diagnosis.
Charlie: Oh my god.
Austin: They'll write that in your medical chart.
Charlie: So wild.
Austin: They basically took a fancy shoe string to close it together.
Charlie: Oh my god.
Austin: Which is still not helpful, so that delivery was super traatic like scarring like inflammatory response that a person with lupus would have occurred. So, I lost like eight inches of my cervix leading up to having Emma.
Charlie: Oh my god.
Austin: And then after having her, my whole body went into this response that came with some other tests, and a different doctor that was like, “I don't think that’s junior rheumatoid arthritis, and let's look.” And then, I had answers, and I still had all this pain.
Charlie: Yeah.
Austin: So, really, I felt very like I was mourning.
Charlie: Yeah.
Austin: And even though I could move and do things and nobody's like, "Oh, you look like you probably are very sick now all of a sudden,” I still felt this loss over what I didn't know was going to come. So you know, eventually I had to have a hysterectomy that impacted me dancing, like, you know, those sorts of things. And then you age like you're going to age anyway. Well, if you put a, you know, disability on top of it, your progression of aging is different.
Charlie: Mhm.
Austin: And ableism is what it is. So, I'm grateful that apparently I look very young, but it's something else to feel very old. Or probably not... I don't think old's the right word cuz there are plenty of, you know, folks older than me that probably are getting around different than I do. But it's my relationship to my body now, it's taught me a lot about grace.
Charlie: Yeah, I mean gosh, absolutely. Because it is… it's like grace, patience, sense of humor, like… some forgiveness.
Austin: Yes.
Charlie: I know for myself it's hard for me to not consider my body like this other entity over here, and just be like, “Oh the body…” and to refer to it as something outside of myself, obviously as a coping mechanism. But do you find that, you know, when you go into bouts of severe pain or it's just not doing what you want it to do that you're like, “I'm going to put you over there for a minute.” Or are you good at like, “I’m embodying this whole thing?”
Austin: I mean I put it over there because it's so frequent in different parts of my body, like you know? It's not like I'm just walking around with this whole throbbing pain of a body, but because every day there's something, and the intensity of it varies, I have to put it over there. I'd be consumed with it literally, physically, if I think about it too much.
Charlie: Yeah.
Austin: You know, or I would not be able to be involved in life. I don't have a different way to say that, but you know, I'd be like paralyzed by it.
Charlie: Mhm. Yeah, absolutely. I mean, I think that it's interesting the narrative of that like, “Be present. You got to be present… We're being present in our bodies.” Whereas when you’re chronically ill or disabled, you're like, “I need a break from being present in my body.”
Austin: Yes. I'm like, “You take this body then be present with it. Tell me how it goes.”
Charlie: Hahaha yeah, it's like, “All I'm doing is being present!” cuz it's just hitting me over the head 100% of the day. Like it's like this absolute shift of being like, “Let's just take a little moment of vacation.”
Austin: Yeah. When you say it like that though, like this idea of presence in the body, and when you're chronically ill, you know, living with dis.. you know, disabled the presence in your body is probably more present than most people. Like, when we think about ignorance is bliss. I don't think it is normal to have such an understanding of every little intricate thing happening in your body. And I'm assuming you get the pleasure that I do of going to get your labs done aaalllll the time. Nobody else is getting labs done so much. Like, I don't need to know… no one wants to know that much about their blood. Right? Like give it a rest. It's there. It's pumping. Like, we know.
Charlie: Haha yeah.
Austin: So like that idea of a vacation. You know, I think when I used to work primarily with folks living with HIV and AIDS, and like I have a chronic illness, and so we talk about it, and this idea of wanting to take a vacation. So also that folks aren't like, “Are you alright? How are you doing? How do you feel?” It's like you have to separate them, or to other folks the only thing then that you are is maybe not okay, or you know, something to be concerned about rather than someone. So, that idea of a vacation resonates.
Charlie: Gosh yeah, absolutely… I mean it really has me thinking about too like the… I don't know, when having invisible illness or invisible disability and that feeling of like, “I just want to go out into the world and like just live my… you know like not be defined by this thing,” and I know for myself it's like all of the many steps it takes to look… and I mean like even right now, it's like, “Here I am!” I like took a shower, did my hair, we're good, we have energy! And it's like, nah, I just went into anaphylaxis two days ago. I feel like shit. I got my Epi pen right here, like just in case it comes back. But then it's like going out into public and being like, let's just be a person in the world, and not, you know… it's like, of course, we can't all the time, and some people can't any amount of the time, but that feeling of being like, "Let me just try and like sneak it by the public."
Austin: Like a little taste. Like, you know, when you go to the kitchen, and no one's watching, you get a little piece like, "Can I do that?"
Charlie: Yeah.
Austin: So, my friend, it makes me wonder, like when we talk about me getting to be your doula with getting your lupus diagnosis. You like being outside the same way I like being outside. And I'm curious for you, because I know that some of my regiment for my lupus means that I got to be a little careful in the sun.
Charlie: Mhm.
Austin: And that that idea of like, “I just want to go do like the rest of the world,” and also not be like, “Can we walk towards the shade??” with every person that I go outside with. They're like, "Girl, you're from Arizona, there's a thing called the sun.” Like I know, but it could kind of kill me, it feels like. So, how's that been for you?
Charlie: Oh gosh. Yeah. I mean, it's so, you know, when I first got diagnosed with lupus, and that was part of it – there was a day where I (this is when I was living in Houston) and I was with my ex, and we went to Waco, TX. And we were with his family in Waco. We were walking, and it was just like, sun-was-beating-down kind of day, and I got incapacitated like in a moment, and I was like, "Oh my god, I need to lay down. Like I can't just sit. I need to be laid out on a floor. I cannot move. I'm in so much pain. Everything's screaming and burning. I was like, “I don't know what that's about.” But yeah, it's like, you know, I walk with a parasol now, and fortunately I'm up in Portland so I’m like, I can be as much of a freak as I want to be up here. Like it’s anything goes. But recently I was at a pumpkin patch with my family, and I have a 5-year-old kind of step-kid. We're not, you know, my partner and I aren't married yet, but you know he's the fam. And we were in this corn maze, and the sun was right on top, and he was like, "Why do you have an umbrella? It's not raining." And I was like, "I'm allergic to the sun." Like the best way I could describe it to a 5-year-old, but now anytime we go anywhere, he's like, "Charlie, the sun! Charlie, look out the sun!!" And he's just like on it for me, which is so cute. But he's like, "Look out! Look out!" And I'm like, oh my god thank you so much for having my back on this.
Austin: Haha right.
Charlie: But it's like his voice is like my internal voice where it's like you see a sliver of sunlight and you're like, "No!"
Austin: Yes. Yes.
Charlie: “Ruuunnn!”
Austin: Yes.
Charlie: Because it's like, yeah I'm in Yeti form all the time. I am like big hat, fully covered. And it's like, culturally it gets hard because up in Portland once the sun comes out everybody's like, no clothes! Like, “What? Who ever wore clothes?” We're going to like tank tops, tiny sundresses. We're going to do it all.
Austin: Like, “Not me.”
Charlie: Yeah, and I'm like I am suiting up.
Austin: You're like buttoning…
Charlie: Exactly. Just all the way. But yeah, I mean, being in Arizona, cuz having lived in Tucson, that Sun feels like it's like six inches away from…
Austin: Right here.
Charlie: Yeah.
Austin: It's like, “Good morning. I'm in your room. Is that all right? I like what you've done with the place.” Sun is right there. But yeah, that it… That feeling… You can tell, like what you’re saying, like it just hits you. That is real. A rash. Like my fever spikes up. It is… And it's wild to say, "Well, it's the sun. It's the sun." Like, also, I cannot live without the sun. I can never live in one of the places where it's dark all the time,
Charlie: Right?
Austin: Like, I need that. I'm definitely a seasonally depressed girly. So it's, I don't know. It's like, that’s the humor, right? You gotta find the humor.
Charlie: Yes.
Austin: Like, I need the sun. Also, it is I'm allergic to it. Interesting.
Charlie: Haha yeah. Great.
Austin: How that works…
Charlie: It's just like from a distance, from the shade, looks beautiful. But it's true! I mean, it makes such a difference even being able to look outside and see that it's sunny and bright, cuz looking outside when it's like 3:30 in the afternoon and the sun is going down, you're just like, I might as well go to bed.
Austin: Yep. Definitely. Yes, it is sleepy time
Charlie: Haha!
Austin: When that natural melatonin, when the sun starts to go down, even a tad, I'm like, "Pack it up. Everyone get inside."
Charlie: Hahaha yeah, do you have your go-to things for sun protection / sun exposure?
Austin: I'm a big hat person. I'm a parasel person. There's a nice bright yellow one behind me that I take. I'm a sleeve person.
Charlie: Mhm.
Austin: And I'm like a, “Where is the shade?”
Charlie: Hahaha
Austin: You see me like scurrying across to get to the patches of shade as I walk around downtown. And Alex, he's like my 5-year-old, like, “The sun!” because he like… I try to keep my cute little yellow parasol. He shows up with this huge, like out of a cartoon, like the navy and white striped… you know what I’m talking about?
Charlie: Like a golf umbrella.
Austin: Yes. And it's like *shooc!* (sound of an umbrella popping open) – Like you could post it in the ground it feels like. And I'm like, "Thank you so much. Hi everybody, it's just me and my umbrella.”
Charlie: Hahaha yeah, it's just like waving the lupus flag, which is the biggest umbrella you can possibly get.
Austin: Yep, and with him being outside riding bikes, then that means normally I'm like, he won't get on the bike until he posts like a tent over me.
Charlie: Yeah. Well, and here's a question, because it’s like those in our inner circles understand that having chronic illness isn't about curing chronic illness. This curative narrative that exists that's just exhausting when you interact with people who are like, "Well, have you tried..?” or “What about…” What is your relationship to that concept of healing or cure or those conversations that we all find ourselves in?
Austin: I think as I have gotten older my relationship to that has changed a little bit. I think like younger me in some ways felt like it's rude to not hear someone out, you know, like they're trying to be helpful. Then it went through a little bit older, but still younger me, like it went drastically the opposite way. Kind of like, mind your business. You're not a doctor. Thank you so much. I don't want your fire cider. I don't think that's going to help, but I'm glad that you enjoy making it. Now that I… like in current times, first, you know, assume best intentions, and I think it's, “Who's it coming from?”
And I think any person that you care about illnesses, invisible or not, there's like an innate want to not see them suffer or being in pain or in hurt, and I try to remember that and what it feels like to feel helpless to someone you care about. And like I think being a parent has helped me conceptualize that helplessness, but there's still this want. So mostly I think of it kind of like how when I do yoga, like you take what you need and you leave what you don't. You know, like I'm accountable to my own response to something, so I can be gracious in here. And sometimes it's not going to cure anything, but sometimes the little tips aren't too shabby. You learn something new. And sometimes it's… I think it's important to just be candid and to help someone else have peace and say like, “Give it a rest.” Like, “I know that you care and you mean well, and no amount of the home remedies is going to help that. So give yourself a rest.”
Charlie: Yeah no, I mean that is such a thing of grace, and I love that approach of being like, yeah it's the yoga approach of: We know people are coming, usually coming, from a caring and concerned place, and being like, “Okay, I hear you. Actually, I could use that a little bit. Maybe not that at all…” As opposed to the hardlined like, “I don't need to hear it.”
Austin: Yeah. “Zip it.”
Charlie: Haha yeah.
Austin: And I think like most things until you really have to flex using them, don't think about them. But like just authentic communication with someone, being able to tell them what you need, so that they're not like just searching, scrolling, lupus remedies. You know, you could just say, “I don't want that, but what I really do… what really is helpful to me… you heat up that heating pad would be lovely, but keep it.. keep it hot.” You know, “Make that your mission.” And I think, you know, or just communicating, “Just to be here is enough.” But I think that we don't articulate our needs even when everything is fine. So definitely it becomes a little harder sometimes when things are not. And I think that folks naturally tend… just similar to when there's too much silence, they're trying to fill the space. And so I think leaving it unsaid and folks are trying to fill that space and…
Charlie: Yeah, for sure. Yeah. It's funny actually, I don't know about you, but I have like lists of helpful things, and I keep them in my phone, because I can't remember… like when I'm hurting I'm like, “I don't know what helps.” And then I can be like, "Oh, go to your list." And you know, it's like as simple as the salty snacks I like to the, if I'm like laid out and cannot move, these are the things that could… like some pillow propping up, like elevate my legs.
Austin: Yeah. Yes, definitely those, or like even, “These are my support shows – the ones that I want to watch all the time.” Right, like these are the musics that I don't mind here.
Charlie: It is true that the sensitivity to sound, like the decibel of sound, goes way up. It's like I desire the softest.
Austin: Yes, because it's like I can feel it on my skin almost. I'm like, “You're so loud. I can feel it.” And that's… I don't know how… Well, my body, sometimes it's like my clothes, they hurt, and trying to convey that to someone else. It's like, you're kidding, right?
Charlie: I knooow.
Austin: And I'm like, I wish I was. How's that been?
Charlie: Oh my gosh. Yeah, I mean, it's really… I'm just thinking about my family and, you know, over Thanksgiving… the month of November was hard. I was hospitalized twice, lupus going off, my degenerative disc disease just screaming so bad. And so, you know, there was one weekend I was over at my parents’ house and everybody was there, and I was just like… I had to use my cane. I was bundled up and just laid out, and mask on, and my mom just kept being like, "This is so sad. Sad!” and I was like, I know it sad but thank you for articulating it so pathetically, just like ah this is sad, but it's like… it really felt like the first time my family had seen me really in the midst of a flare, and being like, “This happens all the time like. This isn't like a one-off suddenly this is just me forever.” But like, you know, these are regular events where I just am like this, and this is what it needs to be right now.
And they just, they're so kind, but they don't know what to do. And so they're like, “Do you need food? Do you need water? Do you want a blanket? Do you want the window open? Do you want the window closed? Do you need more heat? Less heat? What are we??” And it's like, right, I'm good. If I need anything, I'll ask for it. Thank you so much for caring. Like it's very lovely to have a family who's like kind of in a panic of, “What do we do?” But it is like… I think the conversations I've had more lately are like, “You got to trust that if I need something, I'll let you know.” And even if the me letting you know is me being like, “Aaaaah!” and like I can't get the words out, and I just point to the list, you know? Like, these are the things. But yeah, I think it's trying to instill that sense of trust in my inner circle people that I will reach out if I need a meal train. Like, “I can't do this.” And for years, I was living alone and handling all this stuff solo, but it was very much like, I had my text message thread of like eight people who were like, "Let me know. 4am I'll show up. Just say the word."
Austin: Yeah. You mentioning this idea of like, trust. Right? You've gotta trust me to tell you.
Charlie: Mhm.
Austin: Cuz we didn't start by saying what you do, but we kind of do similar things. And so it makes me think about, like in a past life, I was a nurse. I'm learning things in school, and you have to read these case studies, and a lot of them center around folks with disabilities and their autonomy, right? And their ability to make decisions, and it's interesting, your family spent this time trusting your ability to make decisions, right? You moved, you've lived all over. They're like, "There goes Charlie!"
Charlie: Yeah.
Austin: And then you get this diagnosis, and then you have to, and have is not the right word, but this feeling of having to reestablish that trust. And I think that folks, when we think about autonomy and making a decision for yourself as it relates to disability and chronic illness, I think folks think of it on this grand scale of someone that's like cognitively completely impaired, and so, well of course! But this idea of people trusting folks that are living with disability in general, I think is real. I wonder what… I don't know. What what do you think?
Charlie: Yeah, it is interesting because… it has my wheels turning around the large social belief, understanding, or narrative around disability is that people who are disabled are of course infantilized for one. It's just like, “You're incapable, you're unable to do things,” which of course is not the case at all. And so I feel like, you know, pushing through that first massive misconception about anybody who is sick or disabled is such a thing. And I do think that that trust piece is so crucial – to be like, this is a person. This is a person who functions in a way that maybe you don't understand or get, but they are. We are all surviving, and here, and going through the day. And it might look different than yours, but it doesn't mean that we are like 100% miserable 100% of the time, incapable of doing things that we enjoy, incapable of doing things at all. I just… I think about the time, times, that I have been dating straight cis men and something has come up – I'm having a heart episode or I'm having a lupus flare or I got hospitalized and now I'm having to recover and this like, “Oh my god I can't be a caregiver. Like this isn't my role. Like I'm young and healthy. I shouldn't have to do the…” It's like, you don't have to. I'm not asking for anything. Like what are you talking about? But just seeing that very instilled belief that if you're with somebody who's disabled or chronically ill, it just means you're their caregiver. And that's wild to me.
Austin: Totally wild.
Charlie: Yeah.
Austin: I asked you that because I was thinking about this idea of trust, like you just gotta. And, right like, I have kids and there was a point where Alex would intervene like, “No no no… don't bother.” And I finally had to say, “You realize I'm never going to not have lupus.” It's not like when you get the flu, and it's like let your mother rest while she gets over the flu. Like for sure, keep them out. Mooove move – I'll see you when my is over, live somewhere else. Like, I'm on board. But my lupus will never go away. And so when you do that, you are effectively removing me from life, like from what is happening in their day. Like I am accountable and responsible for how I can move in this body, and it might not make sense to you cuz you don't live in the same type of body, but you're taking that away from me even if you think you're giving something to me. So I was… yeah. It’s real.
Charlie: Yeah. No, it is.
Austin: It’s like overcautiousness or something.
Charlie: Yeah, it's like the other… Yeah, there's like the anxious and the avoidant form of being in an, you know, inner circle of somebody with disability or chronic illness, of like, are you going to be the like, “No don't bother them – let them rest so they can just be okay,” or is it the like, “I don't want anything to do with this at all.”
Austin: Yeah, that's a… well for me, that hasn't just been in my romantic intimate relationships, that's in friendship too. You know, you grow up knowing a person in a way, or you feel that you do, and you know it's, “No the sun!” and that.. you know, “But we used to hike all the time.”Like, “I can't be chasing the sun with you,” and what that has felt like. You know, sometimes the isolation of it or the, what do the… the FOMO, as young people call it. And sort of like watching in some ways like, “Oh goodbye,” as seasons change and that's not a thing that is healthy or safe or whatever for me.
Charlie: Yeah, it has me thinking about kind of what care looks like, you know, outside of the biomedical system, but within community. Like what do those care structures look like? Who are the people who just get it? And you don't have to explain yourself. Like who and how do we spend our time, and who with? And when we're super low, what does care look like? When we're doing okay, what does care look like? Do you have kind of an idea or a way to articulate what your care systems look like, or maybe what they used to, and what they do now?
Austin: So I… like biomedical western medicine all that… like, very grateful that it exists. There's also so many things about it that have been very harmful for me, and like, I mean, historically many people, but-and, I'm a black, brown, indigenous queer woman and so my entire life has been around a thinking of: That's lovely that exists, but the community care is actually where that stuff started anyway. And so right like to me care structures… like care is holistic, right? Like we started talking about like, “What do I like?” And so to me care is art and music, and care is food and like having it, sharing it, making it. Care is nature outside. Care is being with other people. Care is being of value to other people. And I think living with chronic illness or invisible/visible disabilities, that trust component and the value that you still give to other people, being part of feeling cared for and meaningful. So my care structures really kind of have always, still do, lie heavily in the community part. And I think even sharing art and music with you, right?
Charlie: Mhm.
Austin: Like getting to see when you find fancy bugs, right? Like to me, that is care. Like, I think we talk a lot about vicarious and secondary trauma, but I think vicarious and secondary joy is so real. Like I could be in terrible pain, but if like, "Oh, look at that. Charlie did some flips." I'm like, "Me, too. I'm not flipping anywhere. I'm not getting out of this bed." But that still invigorates – it fills the cup. So I think that's what my structures look like. And, yeah…
Charlie: Yeah.
Austin: What about yours?
Charlie: I'm completely in the school of thought that I really like to see other people having a good time. It brings me joy. It truly does. And that I'm not like, “Ah, I wish I could be that,” or like whatever the other feelings of jealousy or envy that could come up. But instead, it's like, “No, I love it.” I love when good things happen to people and when people are having fun, and just like getting to see people living their lives and doing their things fills me up. It's one of my favorite things. And I do appreciate digital mediums for that because we can just engage and be like, "Yay, go get it! Live your life!" Um, also, lso food, which we haven't gotten into, but you are such a good cook. And I just remember during pandemic, when we were both in Tucson, and we did like… you did like a cookie dough exchange, like a parking lot, paper bag of cookie dough, exchange with me, and it was like my favorite thing in the whole world. I made them the minute I got home. It was the best!
Austin: Oh, the pandemic was wild. I mean I don't know how it was for you…
Charlie: Oh my god.
Austin: But that thought of trust, too. Like nobody would let me go to the grocery store. I couldn't do anything.
Charlie: Yeah, absolutely.
Austin: But food – food, to me. Food is so uniting. Everybody literally needs to eat. Every culture eats, and really, when you look across the food – the a'll kind of make the same thing. Everyone's stuffing something in some sort of dough, right? Like everyone's making some unleavened something, you know, people are cooking veggies, people are playing with cream, you know? So I love cooking. And I think… I think part of me loving it is also because it’s *pause* …it can be pretty accessible to where everyone can participate. I remember when I was very, very small, and my nana would make stuff – hindsight we were not eating that many mushrooms, but growing up I was like the, very small… I was a mushroom cutter, cuz you could use like a spoon to cut a mushroom, and so she’d like, “Cut these mushrooms!” “Okay.” Like growing up, I'm like, “What?” I don't think she even used them. I think she just letting me cut mushrooms cuz what was she doing with a bunch of cremenis? I don't know. Right. But you can stir things. You don't have to have the best dexterity or anything, and at the end, you've produced something, and that feels great. And if it's tasty, that feels great. And to your point of like, watching other people have a great time – there's nothing like somebody like, “Mmm.. that was good.” Like, “Yes, take another bite. Please.”
Charlie: Haha watch it again.
Austin: Like, yeah, that was good. “Take another bite.” So food to me is like everything.
Charlie: Yeah, cuz it is – it’s like the epitome of nurture, and getting to participate in it is so lovely. And I am definitely a like stretch a dollar type of person, where I'm like we got the dry pantry with all the ingredients, and that is the core, and you just supplement with the veggies frozen or otherwise, and you build it up, and you use those dried beans, and you use that flour, and you make it work.
Austin: Ah, I love beans.
Charlie: Me too. It's like for the longest time I was like, “These don't feel good in my body.” And then I was like, "That's cuz you're not combining them with a grain, Charlie… Haha cuz like eating them out of a can isn't going to be the best for ya." But yeah, I mean, it's just… it's everything. And getting to share food, and there really isn't anything to me that feels better than cooking for other people, or cooking for somebody who's like, "I just need a meal." And you're like, I got you. No problem. I can go – I will do it right now. Like hold on.
Austin: Yeah, and like thinking about earlier when we were talking about the relationship to my body and physically… like I grew up being… I played all the sports. I've been the captain of the thing, right? And so to go from that to, “Well have fun in the sun! You look like you’re having a good time.” Haha.
Charlie: Hahaha!
Austin: I'll be out here under my umbrella. My lupus flag.” But like cooking, and my ability to do that, has not gone a single place. When I think about that that is still something that I can do and do it well, coupled with thinking about that a lot of the folks in my life that are living with chronic illness and disability, there's so much that they can't still do, or like when you're living solo, like sometimes you still need to eat, and also the thought of even looking at a pan is like, “What? I'd rather starve.” Even as a person who… I love to cook. And so I am curious, in your love of food, and like that that is uniting...
Charlie: Mhm.
Austin: Like what's the relationship been on the days where you could care less? And you still need care.
Charlie: Yeah, I mean, it is literally like as I'm drinking this protein shake in the morning *holds up protein shake to camera,* you know, it's like those days where I'm like, I'm like hobbling over, and I can like sit down or lay down, and that is my day. Like nutrients… I feel like I become a utilitarian eater. I'm like, get the calories in. Sustain yourself. Drink water. And just having easy stuff to grab that is nourishing that I know that my body likes. I am like a protein and fat person. Like if I can just eat lean protein, have like a chicken breast and some almonds, I'll feel great, and I know that about myself. And so it's kind of having the easy versions of those things on hand and then having the really comforting stuff on hand too. I remember when I moved… I was born in Houston, TX, which I feel is similar to your Kansas base.
Austin: I didn't know that.
Charlie: Yeah, circle back to Houston, and when I got there, you know, I was like, "Okay, what do I need for hurricane season, cuz we're going to have hurricanes. We're all going to get stranded. It's going to be a thing.” And everyone I talked to about it was like, you know, have your like canned food whatever set up, but get the stuff you like. Like, get the good stu… get the chocolate bars, get the yummy salty snacks. Have those on hand for when you're in a disaster because those are the things you're actually going to eat when you have no appetite and you're in fight or flight mode. And I was like, "Oh, that's the ticket for any flare-up – like any disaster zone."
Austin: You saying that has me thinking of like, I'm almost in the same vein of that trust. I feel like when you're living with disabilities, then everyone is very… the scrutiny around your health. What you're putting, what you're eating is very real. And this idea of like, when you're in a flare up, when you have no motivation to eat, you're gonna want those. And I will tell you, like I very much deny myself treats very often because I'm like, well, I can't have that. Like, I'm thinking about if I eat that then this is… I'm going to be in pain. And I'm like, you know, or just the idea of health that's like put upon us.
Charlie: Yeah.
Austin: Yeah. Like, how did you receive that and be like, “That's a great idea,” like after you know you… thinking like socializing and norms of the opposite ingrained.
Charlie: Right, yeah. I mean, and having grown up as a gymnast where I had, you know, first generation Romanian men telling me what my diet was for like 14 years or whatever. And that it's like, these are the good foods, these are the bad foods, these are where this will give you the most fuel. This will detract or hurt you or cause inflammation. And I think it's tricky because everybody's biome is different. And though of course there are anti-inflammatory diets and other things, or, you know, diets that work for MCAS or diets that work for lupus or whatever it might be. It's also like, you know, we listen to our systems and figure out what feels okay when we eat it. Even if it is in the treat category. Cuz I know that like, if I'm eating a yummy dark chocolate bar, that sits well with me. I can do it's not going to make me feel funky or weird or make me be like, "Why’d I do that?” Like, oh no… haha.
Austin: Hahaha
Charlie: But if I'm like, you know, eating half a pint of dairy-free ice cream with god knows what else is in it, it’s like, yeah I’m not gonna… it’s not gonna… it’s a little bit…
Austin: Haha yeah.
Charlie: But yeah, I think my relationship to being told about the hurricane disaster prep was very helpful in being like, "Oh, I can apply that elsewhere." I think having that information delivered to me when it wasn't me thinking about my body and my health and all my illness and all this stuff and being like, "Oh yeah, when I'm in crisis and the last thing I want to do is eat because I'm going to be so thinking about everything else, like just get the stuff I know is going to go down the hatch. Just get the calories in." And so my easy grab and goes right now are protein shakes, which even a year ago I would have been like, “Absolutely not, like there's so much weird stuff in these things,” but now I'm just like, “I need protein.” Like that's one of my like most helpful nutrients that I can take in – it'll help my muscles, it'll help regulate my entire system, it'll keep me from getting sick. Like, let's go. And then those Chomp sticks, you know those like, those meat sticks?
Austin: Yeeaah, I like those.
Charlie: Yeah, I'm like a meat stick person now too.
Austin: Haley grew up being a meat stick person. I remember her like third… she was like three years, two years old, and it was Hanukkah and she'd pick out her gifts and like… how do you wrap… My mom got her this like three-foot-long summer sausage.
Charlie: Oh my god.
Austin: She's looking at the present – she’s like, “That one! Is that meat stick?!” So she's like running around, right? Like gnawing on this meat stick, and my mom's like, “Can I have some? She's like, “Sure.” Like the tiniest tear… So meat sticks really… they really, they hit
Charlie: They do hit. Yeah, my god. Oh olives.
Austin: Ah, I love olives.
Charlie: I love olives so much. Yeah, and just putting olive oil on everything. That too.
Austin: Very good.
Charlie: Yep. Yeah. I'm like dark chocolate, olives, meat stick, olive oil. Good bread if I can get to it.
Austin: Yeah, that's what got me into baking bread.
Charlie: Oooo yeah.
Austin: Yeah, like if I'm going to do it – if I'm going to have the bread, then I'm going to make it. And I was just kinda like, “And how do you make a hamburger bun? Who's doing that?” And in the pandemic, I made hamburger buns. I encourage everyone to do it once. It was like science or something. Like, there's no way I'm going to put these on here, and they're going to come out the oven looking like a bun. And it totally did.
Charlie: Is it like the flattest looking dough?
Austin: No, like I don't know… Like you put them in they look like little rolls, and I'm like, that's not going to be a bun. But you know, as it proofed and baked and then settled, it looked like a bun.
Charlie: Hahaha!
Austin: I don't know what else is… I was like, “Look at me!” I was so proud of my little buns. I was like, you can't even eat with them – I just want you to look at them cuz I've made this.
Charlie: Pleeaase.. haha
Austin: Yeah.
Charlie: Yeah. What are your go-to foods?
Austin: I also love olives, and really, I love cheese, and it's not… I can't… I shouldn't be having it. It's not very good afterwards. I'm like, "Oh man, I don't know if it was worth it." But then, you know, that means I found all the cheeses that I could have. So, right now I'm very into like a good goat cheese, and I like tear colamada olives and put them on there, and I drizzle the olive oil on it, and I just enjoy that. That's delicious. Uuuuh, I like chicken and salmon. Like, if that is there – same if I just grab some of that, pop it in, eat it. I'm an almond and cashew and avocado person. Like the good fats, that's what sustains you.
Charlie: Yeah.
Austin: And right now I have these like dark chocolate quinoa crispy things. They are so good. They are really good.
Charlie: Okay. Yeah, please send me.
Austin: I'm gonna.
Charlie: Okay. Thank you.
Austine: Haley introduced them to me. She's like, “I think you’re eating quinoa?” I do. “I found these. You might like them.” And they… It's like way crispier than like a Nestle Crunch, cuz it's just these little condensed roasted quinoas. So good.
Charlie: Great. Mhm.
Austin: The second we finish, you're going to get a text picture.
Charlie: Fantastic. We'll find them.
Austin: Yes.
Charlie: Yeah, it… It’s having, knowing, what the little supportive comfort things are. Be it food or the heating pad or an ice pack or a movie we love to watch a thousand times, which is Moonruck for me. I could watch Moonstruck every night and be like, that was good.
Austin: Yep. Same time tomorrow.
Charlie: Yes. Sharon Nicholas Cage. Sure.
Austin: Oh, I have my… The Other Sister is one of my like, I just watch it over and over again.
Charlie: Yeah, dude.
Austin: Don't even like… Yep, let's go for it. I feel sooo delicate. It's like in her little swan outfit. It's my favorite thing.
Charlie: Gosh, well, I'm just noticing the time, which is amazing that we have just blasted through this. But I wanted to ask, like final question, especially given you know the nature of The Future is Sick and Sick Futures Collective and all of it. But big question, if you could design systems or a world built for sick and disabled people, what would it feel like? What would it sound like? What would it make possible?
Austin: Well, what it would feel like and sound like would be that they would be systems created by those people. So I think it would feel like safety. Like trust, accountability, like home. What it would sound like would probably be the good sounds that don't make your skin crawl haha. But systems designed by the folks that are going to access them in ways that are truly accessible, right? Not necessarily dependent upon hours and like they would be flexible in a way that you can access what you need from a system when you need it, cuz we actually are not sick on a timeline that is from 9 to 5.
Charlie: Haha mhm.
Austin: They would be patient and like honoring another person's decisions and hearing them articulate what they are going through and working from a perspective of like person directed, not this list of what a person I guess is supposed to be and how they're supposed to be on this list, and so how do we get you onto this list? Instead of caring for the person that is in front of me and the list that they have right. So they would be systems that.. that… We probably also wouldn't use the word system.
Charlie: Hahaha! For real.
Austin: It would… it would be a community of care that is accountable and person-directed led by the folks.
Charlie: Yeah, hell yeah. I feel like we can work toward it. I really do. I really do.
Austin: Yeah, I think we can.
Charlie: Yeah, I think we are.
Austin: Yeah, I think we are. You know… when change never comes as fast as you need it. And it was… I'm terrible at euphemisms, but I finally figured out the seeing the forest through the trees, you know, one…
Charlie: Yes.
Austin: And I think that you're right, like we’re getting there, but you know when your hip hurts, and you're running from the sun, it's like, “Can you speed it up?”
Charlie: Hahaha please. Help! …Oh god, dude, I love you. It's been so good talking to you.
Austin: I love you, too. I got to get to Portland.
Charlie: Yeah, get on up here.
Austin: Bring my parasol.
Charlie: Yeah, we can be parasol buds.
Austin: Yeah.
Charlie: Oooh, well, I hope the rest of your day and your week are very good.
Austin: I hope yours are, too.
Charlie: Thanks.
Austin: And again, I hope the EpiPen just only has to stay nearby. It doesn't have to make a feature.
Charlie: Haha yeah, thank you.
Austin: And I'm going to send you a picture of these chocolate quinoas, cuz we need treats.
Charlie: We do… We do. Big time.
Austin: Yeah.
Charlie: Yeah. Okay. Well, I'll talk to you soon.
Austin: Yes. Yeah, I will.
Charlie: All right. Bye.
Austin: Bye.
Charlie: Oh, what an absolutely wonderful human. That was so lovely. Always so lovely talking to Austin. They are just, you know, one of the best. One of the best of the best. I feel so lucky to have met them, especially when I did. And I remember living in Houston and being there alone and trying to get through this PhD program and getting diagnosed with lupus, and just making like a social media blast being like, "I have lupus now. Anybody out there know what's going on with this?" And Austin was like, "I got you." And that was just the biggest gift. Like seriously, the biggest gift. But yeah, thank you so much for tuning in to Sick Futures, for being here, for listening to this podcast. We are so lucky to have such incredible people down to be interviewed and to be a part of this, so, you know, just thank you everyone.
My goodness. Yeah, Austin Puca, what an amazing person. Just all of the work they do, all of the wisdom they have, the knowledge, the experience. Just so so grateful. I gotta sign this off by saying that this podcast is an experiment in sick time, in storytelling, and in imagining together. So, if you like what you heard, please share it. Please follow the show and stay tuned for more conversations with brilliant disabled and sick creators, organizers. So until next time, take care, rest when you need to, and remember, the future is sick.