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

Podcast 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.