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.
Episode 1 — Sal Marx: Illness, Art, and Imagining Crip Futures
In our first episode, Charlie talks with artist and narrative medicine professional Sal Marx about creative survival, illness stories, and futures where sick and disabled people lead the work of rebuilding care systems. This conversation explores art, care, grief, and the everyday realities disabled people move through.
Learn more about Sal:
Website: salmarx.myportfolio.com
Instagram: @salmarx11
Watch the full episode on YouTube:
https://youtu.be/d-1PRzPtPZw?si=De__sh1oXdE6MKTU
Topics we discuss:
Chronic illness and diagnosis stories
Art as language, survival, and care
Narrative Medicine
Grief, identity, and crip time
Community-building and collective imagination
Episode 1 Transcript:
Charlie: Hey everyone. I'm Charlie Moses. I'm the founder of Sick Futures Collective and the host of this podcast, The Future is Sick. This is our very first episode. I am so excited. Also, it is Halloween day today, which I think is the best day to record our first episode because it is, in my opinion, the best holiday. I'm so pumped. I am going Going trick-or-treating tonight. I am dressing up as an astronaut. Why not? I don't know. I'm wearing my motorcycle helmet as the astronaut helmet. Is that what you call? Do you call it an astronaut helmet? I do not know. Anyway, I couldn't think of a better guest to kick this whole thing off. Today I am joined by my friend Sal Marx. They are absolutely amazing. They are a trans disability advocate. They are a multimedia artist. They are a narrative medicine professional, and their experience with disability and in disability justice all started when they were a teenager. Gosh, they've led things like patient centered programs in healthc care settings and now they are also joining the Sick Futures Collective board of directors, which is amazing. I am so honored and so excited. We're hoping to build something like a storytelling archive amongst many other things, but that is one project I am so excited about. So anyway, Sal lives in Brooklyn with their cat Sysophus. Kindred cat person, and I am just so excited to talk with them today about all things about disability, about illness, about art making, care, thinking up different future and ways of navigating care, say in medical systems, within our communities, and just the day in and day out of everything. All right. So, without further ado, let's get to it. Sal Marx, hello, welcome. How are you? Here we go.
Sal: I actually have a specific memory from my childhood when I was first getting diagnosed where I had like all these sports posters on my wall and I like ripped them all down. I like made it completely white and then I just like rebuilt it with art and things. But it's a interesting thing to create a space that feels like home.
Charlie: Yeah, that's interesting. So was it because of the diagnosis you were like no sports cannot do will not do or what shifted do you think?
Sal: I think that my dreams of being in the WNBA felt taken away from me and I had to kind of renegotiate with what was possible for me in the future and that didn't look like being a professional athlete and obviously that's okay but it was a little bit devastating to grapple with.
Charlie: Yeah. Especially at 13 cuz Yeah. That's like sports dreams when you're like a pre-teen or a teen are they're big. It's big time. Dang. Well, okay. Well, let's get going. Would you introduce yourself, name, pronouns, where you're from, anything else you want to start it off with?
Sal: Yeah, absolutely. I am Sal Marx. My pronouns are they, them. I am a white queer trans person from an island outside of Seattle.
Charlie: So, you're now in New York. You were in New York. You moved. You came back.
Sal: Yeah, I've been all over the country. I went to college outside of LA, Pomona, and then I moved to New York right after I had graduated, lived here for almost 5 years, and then after finishing my master's degree, I had just had a big surgery and I needed to pay off some debt. So I moved back home with my parents outside of Seattle before making my way down to LA for a short stint, and then made it back to New York which is where a lot of my family is from, and it has always been a second home to me so I'm happy.
Charlie: Oh yeah that's great. On the coasts. How how did LA feel? How was that or I guess I mean being at Pomona sort of kind of LA a little bit.
Sal: It was interesting. I mean LA is is a different kind of isolation than a lot of places I lived in just because you're driving alone everywhere and um that felt hard to me and I didn't I didn't love it. But I do have lots of good friends that are there and a little community that that I miss and you know I still travel back for work so it's it's good to get some sun. But it didn't feel like a sustainable place for me to live long term.
Charlie: I hear that. But New York does New York feels like a good spot for you.
Sal: New York does, which is interesting because I I know it's not the most disabled friendly place in terms of accessibility and subway stations and everything, but yeah, it absolutely does feel like like home and where I want to be.
Charlie: That's awesome. Yeah. How is it navigating transportation there? Just like day-to-day living as a disabled person.
Sal: Yeah. Well, I mean, I pass for able-bodied in more ways than one. I don't use any assistance devices. So, that is a huge privilege and just being able to get where I need to go. I think it's a lot easier for me than for many folks. But, you know, it's still hard having an invisible disability. It doesn't… you know, not that there's one way to look disabled, but I definitely sometimes struggle when I need a seat. I have to sit down, but people don't know that, and so they don't necessarily give up their seat or give you the grace of offering things like that in public.
Charlie: Yeah, absolutely. I feel like that's the one of the trickiest parts about being younger and disabled, but with an invisible disability is that it's like I don't know… I know for me sometimes I'm like on the days that I do need a mobility device, it's feels easier in some ways because at least people can tell.
Sal: Yeah. There's something visible.
Charlie: Absolutely. Well, I put together a series of questions, and we can go through them, or we can just go down some tangents or whatever feels most comfortable, but I'd love to know just kind of generally your experience with illness and disability. I know you said you were diagnosed at 13, which is young, but like not so young that you've been living this way forever – just that I feel like 13 is a hard age to get any kind of big life-altering news.
Sal: Yeah, absolutely. So I mean I'll start at 13. 13 was the onset of my pain. It took me over four years actually to get a diagnosis, a proper diagnosis. I had a number of diagnoses along the way that were first and foremost wrong but also very much rooted in the fact that I was a young female at birth person who was facing all this stigma about you know, “It's just in her head it's not real,” like there's so many things that were told to me at a young age that were very much gaslighting my experience and making me feel like I was the problem, so it took a number of years to just get a proper diagnosis, which eventually turned out to be Ankylosing Spondylitis which is a chronic inflammatory condition. It's a type of arthritis. There's actually over 100 different types of arthritis, but there’s not proper attention to many of them and so there's a huge delay of diagnosis for a number of them and that was definitely my experience. So AS was my first chronic diagnosis. Um I was diagnosed on 11/11/11, so I was 16 years old. But yeah, it's hard to not feel like there's some fate along with a diagnosis that comes on a day that's so, I guess, unique. So since I was 16, you know, I guess it's been a number of other chronic symptoms that have happened throughout my life. It's been 15-20 years of this now. So it's never just one illness or one experience. It's a whole body system that manifests in new ways, and there's quiet periods of disease and then there's flares, and so I've had to kind of learn how to live with those for all this time. That's a bit about it.
Charlie: Yeah, thank you. I had no idea there were 100 or over a hundred types of arthritis. That's wild. Of course. Of course. I mean, a little bit about flares, because I know that so many of us get them, and that it's these super intense periods where you're like, “How do I live? What do I do?” And I feel like for me, whenever I get a flare, it's almost like I'm being reintroduced to my disease again, where I'm like, “Oh yeah, oh s***.” It's the worst. “Here I am. How do I… What is this body? What do I do? I'm so upset.” But what is your relationship to the flare? How do you deal with it? What do you do? Any tips or tricks for your own body yourself? And then also with that, your relationship to this idea of healing that's so pervasive in our culture – that you need to be healed or whatever that means to you.
Sal: Yeah, absolutely. I mean, you might have to repeat some of the questions, but let's see where to begin. Um, well, I think I learned at a young age that there are always people telling you to get over your pain, to outthink your pain, to kind of there's like this restitution narrative. You have to get over it and get on with it. And that there's like a neat ending when in fact you know, all chronic illness kind of inherently defies that there is no cure and the cure rhetoric of our society makes it such that if you're living with a long-term condition, it will never go away. And that's a hard thing, but it's also like a fact of life. We all have bodies that go through phases that do weird things. And so I guess when I'm in a flare, I definitely agree that it makes me kind of like, “Oh yeah, I forgot that I can be disabled and that I have to cancel my plans and I don't have capacity to do what I want to do on that particular day,” and so I think being in a flare requires both like a dissociation where you kind of go out of your body and you go into other worlds just to survive, and then on the other hand, it requires a kind of presence. Like pain requires you to be attentive to it. Like even if you ignore it, it's still going to be there. And so for me, having a flare is this combination of being out of my body and being deeply present in my body. And so that's a big part of why I've turned to art and ways of communicating and processing that maybe I'm not trying to accurately depict something when I'm in a flare. Maybe I'm just like scribbling on a piece of paper in the dark because it helps me move through it. But yeah, in terms of like, there is no cure – and I think that's a hard pill for people to swallow. But in the end, it's it's okay.
Charlie: Yeah, I found that like I don't know… I feel like for those of us getting diagnoses or getting continuous diagnoses, I feel like a lot of us are just in the comorbidity club where it's like every year you get something a little new. But to explain to others that there is no cure has been where I feel like I get a lot of push back or roadblocks, because we want to believe so deeply that you'll be okay and you'll be back to “normal” or whatever you were experiencing before you got these diagnoses. Then you'll just be good to go. And knowing that that's not at all the reality and trying to navigate those conversations which I feel like we shouldn't have to, but we do, and then also that concept of healing where people are like, “You can heal yourself through XYZ. Have you tried this? Have you tried that?”
Sal: Yeah, absolutely there's a philosopher who has MS – her name is Tombs and she talks about illness as kind of these five core things. There's a loss of certainty, there's a loss of control, of freedom to act, of wholeness, and a loss of the familiar world. And I often think about that piece of losing the world that was once familiar to you, and sort of what new world becomes available or doesn't. But, you know, there's there's also a piece of like, we have to rethink our relation, all our relationships in the world, all the spaces and places that we move through, and with every new comorbidity that comes, there's kind of this constant renegotiation with self and environment and all these factors.
Charlie: Yeah. I want to I want to ask about your art and when you started incorporating that into your process of perspective or like kind of worldshifting… when that came about. Have you always been connected to it or creative or kind of found that as a space for you?
Sal: I've always been visually inclined I guess, but it was definitely my grandma who gave me a small pocket sketchbook kind of coincidentally around the time that I was first going to doctor's appointments, and so it became something that was just in my lap. You know, you spend a lot of time waiting in waiting rooms as a patient, and there's not really anything to do, so it became something that I did for myself to pass time, but also I guess to bear witness to what I was going through. I have very vivid memories of just like sketching the fish in the fish tanks in the waiting rooms in Seattle Children's hospital. But since then, I mean it's been a huge part of just how I process living with different chronic illnesses – how I share and communicate with my communities. And I think it has also taught me a lot about access needs. So I don't always have the energy to say, like, work on a massive painting which I do do. But I have found that there is always something artistic that I can do. Even if it's the lowest energy day or a high pain day, you know, I could just be sitting at my desk scribbling or I can be doing lino cuts or folding earrings while I'm watching TV. Like I find that being physically engaged with art helps me not be so overwhelmed with a pain experience or an illness experience. It really helps to get me out of my body no matter what the method of art making is. And so I think it's a huge tool and something that everyone should incorporate in their lives whether or not you consider yourself an artist, just as a way of dealing with illness and moving through it.
Charlie: So cool. Yeah. I agree, I feel like it's an innate thing for humans to want to create stuff, like make stuff and to find your niche in that, like whatever it might be – be it writing stories or poems or making visual art or taking photos or collage… it's like getting into that space of flow state and being totally present. And for our bodies that are hurting constantly, it's a really nice, low-stakes way to engage in something and feel connected to something. Um, I know that you went to school for narrative medicine, and I wanted to talk about the connection of that to your art, or if you've been incorporating art through your educational path, how that looks. I have so many questions about it, but we'll start there.
Sal: Okay, I’ll begin with that. So I my undergraduate degree at Pomona was in public policy, psychology, and media studies. And so I wrote my thesis about the ways in which rheumatoid arthritis got all this attention, all this money, all this support and public policy as compared to a disease like AS that had nothing. Nobody had heard of it, and that in turn trickled down to the extreme delay of diagnosis for people, and so there was a component of storytelling that I became really interested in because the ways in which we talk about diseases matter. AS was historically thought of as a man's disease, which is really to say that all the research that had been done on it was predominantly conducted on older white men. And so their understanding of who the illness affected was so far from reality. And by thinking differently about the ways in which we talk about illness, and who diseases affect, it helps all of us, but especially getting diagnoses – that's a big part of it. So, let's see… It's hard to tell this in a linear way, but so yeah – I had been making art since my thesis for a while that was like putting my body scans up on the wall alongside written text about my illness experience, and so there was always this component of my art practice that had been about communicating illness experience. And so I had learned about the narrative medicine program. I knew that it was a varied mix of people that it attracted from doctors to artists like myself that’s all about how telling stories is central to patient care, right? And if a doctor isn't able to adequately receive the stories that are told to them, there's a huge gap. And on the other side, if a patient isn't having their voice heard in the ways that they need, there will be huge gaps in their care. And my perspective is that if art and visual ways of talking about illness… like if art can carve a home for illness, then narrative medicine teaches us to step inside those homes, to listen closely, to ask questions, to be aware of what's missing, what's left out, what are the other things at play here. And ultimately to to take great care in the stories that we're telling and that we're receiving.
Charlie: Dang. Yeah. I mean, it really is. And we know what it feels like to be sitting there telling your doctor what is going on or trying to and then for there to be crickets on the other end and to not be heard, and to know you're not being heard, and then to get kind of a like blanket treatment plan or diagnosis or like, “I don't know what to tell you.” Versus being in a room with a doctor who's like, “Tell me your story. Tell me what's going on. I want to hear what you're experiencing.” They're taking vigorous notes. It's just a fully different world and experience. And I imagine with focusing on narrative medicine specifically, were there any kind of, I want to say, best practices for doctors or anyone working in healthcare?
Sal: There's not like a short list. It is a way of showing attention and looking closely and listening differently. So, it's more like humanities based skills, I'd say. But for example, I'm just thinking what you were saying, like in a patient setting, like medical records – there's never a chance for a patient to read what a doctor wrote about their story and basically say, "Here's what you got wrong." Right? I'm thinking about one of the visual projects I collaborated on in grad school with a friend Jen that that we have in common who had been facing medical racism and gaslighting for almost 15 years. She was trying to get an epilepsy diagnosis, and she later learned that there were words written in her chart that were getting passed on to other doctors that were basically repeating this idea that she was just worried and that there wasn't an actual real problem. And it's like, when this gets repeated and passed down and funneled through medical records, it's like this is structural racism, and if the patient had had a chance maybe to collaborate, like look at their the notes that were taken about their story, there would have been an opportunity much earlier in her illness diagnosis process to get it right.
Charlie: Understanding her struggle with the medical system and that it's just so common, especially for like AFAB folks, for assigned female at birth folks, it's like we're just always “anxious.” Like that's the default for any doctor is just like, “Oh, they're just worried. They're making it up. It's in their head. It's not a big deal.” And like living with that and being gaslit and then embodying that or kind of internalizing that, especially when you're younger or truly at any age, you're like, "Right, these are the people who know things. Who am I? If they're telling me that this is what it is, I guess maybe that's it." And then getting to a point where you're like, "Wait, no, I have to fully advocate for myself in these spaces.”
Sal: The greatest injustices in our healthcare system is this one that's the epistemic injustice – the inability for people to have their voice, as knowing, heard, right? And so there's many opportunities to get it wrong. But if we think differently, if we think creatively, if we talk about increasing patient collaboration from the onset of any encounter, we'll all be better for it.
Charlie: Getting diagnosed at 13, who were the advocates in your life, or who did you see pop up as advocates, or were you like, “I'm just taking this on by myself here?”
Sal: Primarily my mom. I mean, in the end, I had this wrong diagnosis from Seattle Children's Hospital, reflex neurovascular distrophe, which is now outdated. I think it's kind of like CRPS, complex regional pain syndrome, and the only reason I was able to get a diagnosis was because my mom's adult rheumatologist saw me as a favor. My mom was like, "Can my kid just come with me to an appointment and will you take a look at their MRI?" And that doctor, Dr. Gorman, who is still my rheumatologist like 16 years later. And so, if I hadn't had my mom literally demanding a specific MRI that Seattle Children's Hospital refused to do, there would have been no diagnosis. But, so my mom, that doctor (and I still do have a great physical therapist at home), so there have been a number of people that I guess have been consistent advocates in my life, but ultimately that need to advocate for myself got put on my plate at a young age.
Charlie: There are plenty of scenarios where somebody doesn't have an advocate. They're going through the medical system, just like shat on in a multitude of ways depending on what they look like, where they come from, what their financial situation is – all of it. And just trying to white-knuckle through these systems is it's absolutely horrid, and we all know it. Part of the Sick Futures project really is thinking about what we want the futures to look like regarding care, regarding healing, accessibility, all these things. And I wanted to know if you have an idea or kind of a systems approach to what that future might look like.
Sal: I think one of the one of the hardest things when I talk about living with chronic conditions like on an ongoing basis with people is that I'm often faced with the response that they're sorry, and I would propose that instead there's a curiosity about living with illness, and like it's okay to talk about it – like it's not something that people should be sorry for even though yes, pain and illness are extremely debilitating experiences, and I don't want to belittle that, but in terms of what it would look like, I think my process of working with patients and doctors in the co-creation way, the project that we did, also kind of goes back to these core questions in my work that are all about like, number one; how can we collaborate across access needs? You know, if we had questions like that built into every encounter, I think that would be a future where all people could be a part of it. Number two; how do we address power differentials that are inherent in and outside of clinical spaces? Thinking about how we build spaces for narratives, for illness testimony that are not only verbal or written, that are creative, that are given opportunities to exist on crip time, that don't need answers right away, that are moving slowly and carefully and with care. So I think a future that is a led by sick and disabled people is a first step, but I’ve been thinking a lot how we create worlds, literally speaking, that are accommodating all sorts of physical and mental conditions and opportunities to have voices heard that are outside of traditional modes of language.
Charlie: Yeah, it really is the stuff we know, that those who are being the most affected are the ones who have the most experience within these spaces. And to be able to put us in leadership positions around what care looks like, what the medical structures look like, is crucial. And it's like, how do we get in there? How do we infiltrate that? And organizing and like really, truly mobilizing within regions, within our communities. I want to ask, with where we're at right now… Also, I just like had a thought about prefigurative politics where we're living the futures we want in the present… but you know, what does your care look like? Like at present through community, through your art, your creativity, through spirituality? Kind of anything else you got on the docket?
Sal: Yeah. You reminded me I recently learned this term crip doulaing that was coined by Stacy Park Milbern, and it's like the process by which disabled people mentor other disabled people in learning new disability skills.
Charlie: So cool
Sal: Right? I know. So it's like there's this whole education about being disabled that has been passed down to me by close communities of disabled people. And that's such a gift, you know, whether it's learning how to give yourself an injection or commiserating about colonoscopy prep or needing to advocate for yourself with health insurance things, you know, like there's very tangible practices that disability communities have taught me that I work to pass on. So I think in my daily life now, care, it looks like a lot of things, but it's noticing and showing respect for all the ways in which we push ourselves past our spoons all the time. I have this list above my desk that's basically excerpts from Care Work by Leah Lakshmi Piepzna-Samarasinha, that everybody should read, like there should be books that are core education for everybody I think, and care work is one of those books, so I mean, there's so many things that the care looks like on a daily basis in terms of checking in with my communities, checking in with myself, trying to just like listen to my body. Like I think many people with chronic illness kind of relate to this feeling – like there's a dissociation that happens a lot of times because having uncomfortable physical experiences makes you develop survival strategies that look different to everybody. So it's… I mean, care is being with my cat. It's trying to nourish myself, trying to meet myself where I'm at. Like, my body's in charge. My body is the clock. There's no prescription. And I think one of the things that a lifetime of chronic illness has taught me is that I'm never going to have a care plan completely figured out. There's a constant kind of figuring it out with my people and my doctors, but in terms of just like living and processing illness, it's a daily thing that I just have to kind of meet myself where I'm at.
Charlie: Yeah. So relatable. I mean, it's like a moment-by-moment experience of care being like, "Oh, a minute ago, alright, in this minute severe pain, discomfort, nausea,” like whatever's coming up. Those care communities are crucial, and it's something that Sick Futures is doing actively – just wanting a space for people to be able to come and be themselves and be in an environment and around people who just get it – where we don't have to explain ourselves or situations and where it does move at that crip time. It moves at the pace of care and caring, and that there's a collective study guide that exists there for people to read Care Work – there's so much good stuff in it, to check out Sins Invalid – there's so much good stuff there… But I want to know how you've built your community with other people who are disabled or maybe are indirectly affected, but they've got family members who go through it. What your process has been to come to that community point.
Sal: I feel like I've been lucky enough that that community has kind of come to me over many years and in very serendipitous ways. My first connection with somebody, I was recently diagnosed, I had been doing this fundraiser for AS and working with the Spondylitis Association, and I got a random Facebook message that I didn't even see for a whole year and it just was in my my message requests, and that person Karice Hill became a close friend of mine and a real mentor in the disability community. In college, I met somebody that had recently had a diagnosis, and I was helping her learn how to do her injections for the first time. And it's like, I think people kind of act often like, “Oh, you have chronic illness? You should talk to this person.” It’s been helpful to have these random connections and friendships that grow into my life by virtue of that we're both living with some shared experience, you know, and I think what's powerful, is that the ways in which we have… like I've found ways to sustain those friendships and those sources of community even though these people in my life are literally all over the world and we don't always talk often – like there can be years that go by that we don't talk but when we when we do, whether that's just to check in or if there's something specific someone's going through, I feel like it's easy to pick up easily with people that have an experience of disability. It's like we're comrades in this. We understand it and there's a sense of care that's inherent to it. And so that's something I cherish, and I feel a great kinship with disabled people all over the world. And in no way do I have like an end to this. Like I hope that it keeps growing and that we can keep finding ways to come together more because often it does feel like there are these one-on-one connections, but where are the spaces that all the sick people are having opportunities to engage with each other that do live across time zones and access needs. And so that's one of the awesome things about Sick Futures that I think I was most drawn to, is let's just build a space and try to get as many of us together as possible.
Charlie: It's like sick and disabled people, if we like had the torch on some of this stuff, like capitalism just couldn't exist. It just wouldn't even be here. There's no way. But your experience with that kind of… I don't know what to even call it. Like if there's been pressure on you to be like, “Don't let anyone know.” Or not, like if from a young age you've been like, “This is me and I'm showing up and deal with it.”
Sal: Yeah. No, definitely. I mean, even my parents, well-intentioned, had strong opinions about putting on my resume the different kind of work that I was involved in that was outing myself as being disabled, and you know, maybe it does limit your opportunities, but at least it means that the ones that you do get, at least they know what they're getting. And I don't want to work in a space that doesn't support disability in all its fullness and visibility anyways. As hard as it is to bring things into the light, I think it attracts the right kind of people and mission driven work.
Charlie: Mhm. I agree fully. It baffles me that disability… where it's like, “Don't let anybody know this part of you because they will discriminate. They will actively discriminate or discriminate without realizing that they are.” Which really, I think it just baffles me that we're still in this position with disability, because it's one of those things that most everybody's going to experience in some way, shape, or form at some point in their lives, but we're all just supposed to pretend like it doesn't exist. Being in spaces where, especially like, work environments or just really any setting where people are like, "Yeah, we don't care. Come hang out. It's cool here." I guess in those spaces, what has accessibility looked like? Like what has like dialogue around illness or disability looked like? Could you do a compare and contrast to environments that aren't cool with it and then environments that are?
Sal: Yeah. I mean I feel like most work environments by nature of being businesses are on a timeline and a fast pace and don't really honor the slow pace and the ways in which like you don't really know in terms of disability when things are going to come up out of the blue, right? So the spaces that I tried to create in my work that do have this understanding are um… it's like this access needs piece is built in, like specifically talking to the person that you're working with. What are your access needs? What does today look like for you? You know, being open to having their access needs change over the course of a project. Like it's never a one-size-fits-all at the beginning. The piece about time, you know, moving at crip time, allowing things to take whatever time they will need, and then again about language and opportunities to allow people to speak in the ways that are most in line with who they are. I think so much of the clinical encounter that's based in extraction, like let me get all this information from you and put it into your chart and not really allow even just patient questionnaires, like the very frameworks that people are given have such a bias on what information is then pulled out of them. And it's like you could go see a doctor and fill out a pain scale and walk away from an appointment feeling like nothing you said had anything to do with your actual daily experience of pain, right? So how can we rethink the frameworks and the methods for engaging that are breaking down that box?
Charlie: Yeah. Gosh. I mean, it just… It has me thinking very expansively about how these things could look different, and you know, it's like communicating to health care systems or really any of these structures or systems or workplaces or whatever it might be just how to not paint with such broad brush strokes when it comes to connecting or trying to get information or feedback. And that it would just be, I don't know, such a clearer, more honest world. I want to know how being disabled has shaped the way that you think about yourself or think about the world or really approach everything you're up against every day.
Sal: Being sick and disabled has taught me that… I mean so many things. I can read you a list, but let's see… First and foremost, that we need each other. There's such a hyperfocus on individualism in this country that I think before you have to rely on people you maybe can go through it not realizing that you need a community of people in all sorts of ways to help support you in whatever way they can. You know each person is full of a diverse set of bodily experiences that it’s taught me that everyone has a relationship with their body, right? Whether or not you're sick and disabled and whether or not you're paying attention to it, everybody at some point sooner or later has an experience with illness, and the sooner that people can kind of get on board with the fact that our collective liberation is all tied together, no matter where you are on the scale of sickness and disability, you know, only by moving together and creating opportunities for people of all sorts of abilities to lead and to build worlds will we find a way out. I mean, being disabled has taught me that it's okay to stay in, to be in bed, to build worlds where I once felt confined. Care Work talks about this a lot, the crip emotional intelligence, that while there are so many disabling and debilitating parts of illness, there are also huge gifts of imagination and creativity that by nature of just having to adapt in a world not built for us, we are able to access, and that's such a powerful thing. I would never go back to being unsick just because I can't imagine how closed off your world is if you don't have a confrontation with having to recreate it.
Charlie: Yeah, that's so cool. It really is – it opens it or like cracks it right open when you're like, "Oh, I take issue with this. I take issue with the way that things are and the way I've been placed in it, and then it reframes and allows you to look at the world, your experience, the experience of everybody else in a completely different way. I think often about how folks who aren't going through illness or disability don't really think about what it would be like if you were sick or disabled… like if you're not dealing with that. It's not on your radar you don't really have to consider it, versus our experiences of being like, every moment here we are, let's do this. But it does… for me it definitely made me softer or something, where I'm like, Everybody! All the friends I could ever get!” I'm just like open to it all, and the connection points feel like that much more solid, and I don't know, just vulnerable and open than they ever were before.
Sal: Yeah, it connects us – like I feel like it's such a gift to… I have so many multi- or like, different people that are different ages than me and we have a connection even if you're 80 years old or five years old having an experience of illness that it's like you're immediately friends.
Charlie: Yeah. No, it's true. It's like you get on the same page real quick when you find out someone's going through it. Like one of my great aunts has lupus also, and so she and I are just like, “I get you, I see you, and I know how bizarre it is to live with this mystery disease.” And she's in her 90s. I do love the aspects of that. I think it's the reality of being like, “Yeah, this sucks.” And accepting that and knowing that and being like, “It's a s*** show every day. What are we doing?” And also being like, yeah, and there are the parts of it that make it worth it, very worth it to be here and do our work and connect and live our lives, and that our lives aren't something to take pity on or to feel sorry about – that we're just out here living and enjoying our time and dealing with the stuff that comes our way. Every living thing is going to deal with the stuff and it's just a different flavor depending.
Sal: It helps to have a sense of humor about it a bit. I mean, part of my process of drawing is like gathering information about just my daily life. Like, it's silly to do a drawing of the carton that they give you when you're doing colonoscopy prep. Like that's just a silly thing, but it helps me have some, I guess, distance to it and look at it in a light way. But I mean, I have a grandpa who's sick and in so much pain, and I see him like unable to get past this loss that he's experienced. And so, I don't want to belittle the fact that it's a really hard thing for people to grapple with if you've lived an entire life as an able-bodied person and all of a sudden your entire world has changed, and so I don't know, the answer when somebody is really struggling to accept that their body and minds are able to do things differently or not able to do things at all.
Charlie: Yeah, I think talking about the loss aspect a bit or the grieving around it – the grieving of that extreme shift. I think it's cool that when you were a teenager, you were able to be like, "Hey, let's blank canvas my room for a second, my world for a second, and figure out what I need to bring in to have it feel good again." Can you kind of remember back to that grieving place when you were a teenager and what that felt like or what helped you with it?
Sal: Absolutely, and I'll say I think the grieving is an ongoing thing like there's an inherent part of living with illness that there will be things that you grieve whether that's the loss of something that I used to be able to do or the the ways in which even in the present moment I feel like I don't have access to spaces because I'm immunocompressed, and not every space is friendly for people that have imunocmpromised systems. So facing grief is an ongoing thing that I think you kind of have to just make space for and hold it in your hands and look at it, and that's a big part of my art practice is also a grief practice, you know, honoring that inner child that was so afraid. I think it would be awesome if we created space for grief more in our culture and communities. Like there's such a pressure to be the optimistic patient – very uplifted all the time, like there's going to be a happy ending. I mean, it's back to this cure rhetoric that like even if there's no cure, let's put all our hope that maybe someday there will be, you know, instead of saying, “Okay, what if there is no cure?” What is the grief that's going to come along with that? How do we hold space for it? And how do we recognize that as real of a lived experience as pain or something like that.
Charlie: It really is like a what would the world look like if we were allowed to be in be in grief spaces and to understand and accept that things might not all “work out” the way that normative society wants it to. And that we just get to fully embrace ourselves in our bodies as they are while that continuous grief happens and giving space for it. Just like, letting ourselves be sad when we need to be sad, letting ourselves veg out when we need to veg out. I have my zone that I just call couchland. I'm like I'm in couch land today. We are on the couch. We are sitting on the floor leaning on the couch. We are not leaving the couch. This is just where we are going to be. Do you have any places in your home where you're like, “This is my good safe cozy place?”
Sal: I think my entire home, I mean my small apartment in Brooklyn, is definitely a curated safe space for me because I spend so much time here, and it has to be a space that physically and mentally I feel at home in. What you were saying earlier was making me think about like what if we were able to describe grief or describe pain in ways like it was its own character or color or shape. I think a lot about colors in terms of their ability to communicate something outside of words, you know, like sometimes grief is blue, but sometimes it's yellow. There was this comic I did a while ago where one of the first panels said, "Step one, listen to your pain. Let it take you on a walk." So like what would it look like to give a voice to these different feelings, experiences, bodily symptoms in maybe ways that I don't have conscious access to, but if there's an opportunity to just try to process it through a visual or, you know, nonsensical way, there's extreme value in that too.
Charlie: No kidding. And I, you know, as you're talking about that, I was looking at the art behind you. And if y'all are listening or reading and not watching, Sal has amazing art behind them that I'm imagining you painted?
Sal: Yes. Everything in this apartment. This is my working studio, too.
Charlie: Great. And I'm looking at the colors and from my view on the left, it's like very blue, very blue, a little yellow, and then there's this shocking one on the right that’s a red, vibrant painting. And I guess to walk us through where you were at when you were painting these and the difference between them.
Sal: Oh yeah. I mean, every painting is a little bit of a different place in my physical experience, but I don't think there's like a, “The blue ones are the sad ones, or the yellow…” It's not like that. But I would say that red one behind me is definitely a recent one that I was feeling inflamed and kind of my body was angry, and so I rarely paint with red, but sometimes you just have to like, only paint with red.
Charlie: Yeah, I agree. Like looking at it, I'm like, that's a flare. That's what that feels like. Absolutely. Are there kinds of colors or mediums or styles that you're drawn to when expressing pain or grief or happiness or acceptance, all of these different things?
Sal: I love oil pastels because they basically turn out to be like finger paintings. Like blending on a piece of paper or a canvas feels very physical to me, and that is helpful to move through. I don't know. It all depends, like there's so many different mediums that have their own stories. I'm like looking around… but yeah, I mean, I take my art on the go and I take my art in bed. You know? You have to find ways to meet yourself where you're at. And I think that the greatest gift that art can offer us is that it can be anything. And it's like prioritizing process over product, like very much mirrors my relationship with my body, and like, “There's no goal here, but let's sit with it and give space for it to have its own language and whatever comes up.” It's not like I have a plan for every painting that I do. In fact, many of them I kind of have to live with alongside for a long time. Like the canvas is a living thing in my apartment… What's really frustrating to me, like I'll send a painting to someone and they'll be like, "What does it mean? I'm like, I'm not going to. The painting is what it is, and let it speak to you for itself. I mean, I can tell you what it means to me, but I strongly don't like having to read a painting back because I don't think there's an answer. You know, someone else's interpretation of my work is just as valid as my own, and I think that's a beautiful thing, too.
Charlie: Absolutely, it has me thinking about, I mean with any medium, it's more about helping people feel less alone, those connection points, than it is about interpreting it in the way that the artist wants you to interpret it. And I wanted to ask before we before we close up here, because we are coming up on the hour, are there ways that listeners or readers or those watching can best support you and your work or the projects that you do? Do you have your work out in the open? Are you sharing it in certain spaces?
Sal: Yeah, there's a number of things on my website online, on socials you can find me. I'm @salmarx11. I'm hopeful that we will be building some more visual work on the Sick Futures website. I also sell prints – I don't have a very up-to-date website with that aspect right now, but if anyone wants to get a print from me, I can make prints of anything. And I would love to collaborate with folks, so, I mean, maybe just putting a pitch out there if you're someone that lives with a chronic illness and you want to have your story co-created in a visual way I would love to hear from you and, you know we were talking a bit last week, I think it was about like how do we build an archive where we can see stories in one centralized database of sick and disabled people in their own language that's made by patients with patients for patients, and I say patients but I really mean people, like we're more than being patients, and so if you have a story and you want to have this be included, there's no shortage of people that have experiences that need and deserve to be told.
Charlie: This is awesome. And just to spell it out for people, S-A-L M-A-R-X. Is that right?
Sal: Yep.
Charlie: Cool. Great. And what's your website?
Sal: My website is my name www.salmarx.myportfolio.com, but if you Google me, I think it's one of the first things that comes up.
Charlie: Oh, that's great. Wonderful. Alright, anything else we didn't cover that you want to talk about? I mean, there's so much. It's like I want to ask you more about your childhood experiences, and then getting into young adulthood, all of these things. But maybe we will save it for another episode in the future. But thank you so much. I really, really appreciate you being our first The Future is Sick guest and taking the time on this fine, fine holiday. What are you doing for Halloween? Do you have any plans?
Sal: Oh, no. I'm flying out to LA tomorrow. I have to decide if I'm dressing up, so we'll see.
Charlie: Nice. Great. Well, I'll talk to you soon. Thank you!
Sal: Yeah, sounds good – thank you, too. Thanks for making it happen.
Charlie: Yeah, for sure. All right. We'll see you later.
Sal: Okay, sounds good.
Charlie: Bye.
Dang. Okay. That was awesome. A huge thanks to Sal for being a part of this very first episode – for all their wisdom, just for being an incredible person overall. And their art is so wonderful and so necessary. My god, like what a cool way to share our stories and our experiences and to just exemplify what we're feeling. And totally agree that for all of us, having some kind of creative practice is such a great way to connect and to feel less alone and to share ourselves and our stories with each other. Gosh… so, if you want to learn more about Sal's art, about their narrative medicine practice, or the work they're doing with Sick Futures, you can find links in the show notes and links on our website in our podcast web page. But anyway, this podcast is an experiment in crip time, in storytelling, in imagining futures together. So if you liked what you heard, please share it, follow the show, and stay tuned for more episodes, more conversations with more brilliant disabled creators, organizers, thinkers. I'm just I'm so excited. This is wonderful. So, until next time, y'all take care, rest when you need to, and remember, the future is sick. Bye! See you next time.
Meet our new podcast: The Future is Sick
Our first episode launches soon — each month we’ll feature a guest from the sick and disabled community.
Each month, we share stories and dialogue that imagine better futures of care, access, and survival. The trailer’s out now — listen wherever you get your podcasts.
Podcast Transcript
Host (Charlie Moses): Hey everyone – thank you for tuning in. You found Sick Futures Collective. We are a space led by and for sick and disabled people, and here we are working to change the systems and structures we live in to shape the kind of futures we want. I’m Charlie, and this is our very first episode. It is our trailer and it’s gonna give you a sense of kind of what we’re building together and what you can expect from the podcast.
Our slogan is “The future is sick.” And we mean that literally, politically, and playfully. Because sick and disabled people have always been futurists — we are adapting, re‑imagining, refusing, and surviving.
Here, you’ll hear stories, experiments, and conversations that explore how sick and disabled knowledge shapes the world we’re building.
We’re gonna talk about things like:
Mutual aid and care networks that actually work,
We’ll talk about how systems-change and policy-change can work in our favor and not erase us,
We’re gonna talk about the many ways we’re reimagining things like access, rest, recovery, labor, creativity,
And we’re gonna talk about what it means to build futures where we’re doing more than just surviving.
We’re really trying to make this space an action-oriented space – using the ol’ 70/30 rule where we spend 70% of this time reimagining, constructing, and brainstorming all of the many different ways the future can look to support and bolster sick and disabled lives, and then 30% of the time critiquing the very gnarly systems and structures we currently live in.
Some weeks it’ll be me with friends or experts or authors and thinkers having real conversations. And then other times, you’ll hear short stories, maybe audio essays, or little field recordings and poems. We’re really gonna make this a little charcuterie board – little bits of everything, ya know?
Um so if you’re new here in the sick and disabled space — welcome. If you’ve been doing this work for years — welcome back. You all belong here - we’re excited to have y’all here.
And that’s it for today!
Follow Sick Futures Collective wherever you get your podcasts. You can find more at sickfuturescollective.org and on Instagram, TikTok, Twitter, and LinkedIn. And you can find the written transcript of the podcast on our website.
We’d love for you to get involved. Submit your stories, your art, music, creative audio, zines, poems — whatever you want to share. Submission guidelines are on our website as well. Everything we build grows from community, and we are so grateful for it and so grateful for you.
So stick around. The future is sick, and we’re gonna build it together.