EP15 → Daisy Friedman on Tradition, Filmmaking and Embodiment
In this episode, Nora speaks to Daisy Friedman, a writer, director, and multi-organ transplant recipient. We talk about Daisy’s story: she received critical transplants as a child which led to her current work as a filmmaker exploring themes of tradition, intimacy, embodiment, and disability.
We discuss the complexities of chronic illness, societal perceptions of disabled bodies, and the empowerment found in creative expression. Daisy talks about her latest short film, Unholy, and how personal experiences shape her work. The episode also touches on the importance of community and the role of art in navigating and articulating the lived experiences of disabled individuals.
Website: www.daisyfriedman.com
Instagram: @daisyfriedman
TRANSCRIPT
Daisy Friedman
[00:00:00] This is So Life Wants You Dead, a show that explores the intersection of illness, disability, healing, and creativity. I had an emergency organ transplant in 2015, and despite the drama of the situation, it turned out that near death was fertile ground for my creative life. Now, all these years later, I can say that was what saved me.
That, and a brand new liver. I'm Nora Logan, and this is a podcast on how looking at death Today my guest is Daisy Friedman. Daisy is a writer and director based in New York City. She's also a multi organ transplant recipient. And as such, her work centers mostly on the intersections of tradition, intimacy, embodiment, and disability.
Her most recent short film, Unholy, just had its world premiere at Sundance 2025, which is such a [00:01:00] thrill because we discussed it on the show, which we recorded a few months ago. Her work has been featured in Deadline, Variety, Advocate, and Out Magazine, and screened at prestigious film festivals such as Frameline, Inside Out, and Outfest.
On today's episode, we talk about so many things. but mostly the complexities of chronic illness, societal perceptions of disabled bodies, and the empowerment found in creative expression. We also talk about the process of filming Unholy and how Daisy has found her voice through filmmaking and poetry.
Here's the conversation.
Welcome to So Like Once You Dead, Daisy. It's so good to have you here today. I'm so happy you could join us. Thanks for having me. I'm super excited. So you're a writer and a director, and you're also a multi organ transplant recipient, and I wondered if we could start with you telling us a bit [00:02:00] about your background and your story.
So I was born in New York City, my family is from New York multiple generations back, and I was born with a gastrointestinal disorder called gastroschisis, where your intestines develop outside your body, and your abdominal wall doesn't fully develop. So I had surgery for that right when I was born.
And from that time forward, I had a bunch of different surgeries for gastrointestinal disorder. Things I don't really know about what they were, um, but it ended in something called short gut syndrome, which is where the majority of your intestines get damaged or have to be removed. So I was put on a feeding tube at a very, very young age and didn't eat, and that turned into needing a central line and something called TPN, which is total parenteral nutrition, which is where you get a central line placed and you get fed through your heart, In a liquid form, and that formula for TPN was really, really new at the time, and I was at Columbia Presbyterian, I [00:03:00] believe, don't quote me on that, and it ended up killing my liver because I was so young, and my liver was so small, and it had fish oil in it at the time, which was not the move for it.
liver, like healing food, so it ended up killing my liver and the doctors there sort of were in denial about it. And they said, No, no, no, no, no, no, no, no, you're fine. And my parents were like, I don't think so. So, uh, my how old were you? I was two and a half when that happened. And my family, um, was researching the best gastrointestinal rehabilitation programs in the country.
And the one that came up at the time in 2006, 2005 2006, was the UNMC University of Nebraska Medical Center in Omaha, Nebraska. So my family got on a plane, went to Omaha. I was only supposed to be there for about a month just to get a treatment plan so that they could kind of set me straight and then go back home.
And they literally took one look at me and said, no, you need to move here. You need to [00:04:00] live here. You need to have a transplant. And so my mom, I guess my dad called my grandparents and literally asked them to sell our apartment. And then I grew up in Omaha.
In 2006, I had a small bowel, liver, pancreas transplant. And then a year after that, I had post transplant lymphoma, which is something that can sometimes occur when your immune system is very, very, um, yeah. After a transplant and yeah, that's sort of my younger life. And then I kind of grew up in Nebraska Really wanting to be super normal.
Um, Nebraska is not the best place to be anything but that all the time So I really pushed away from a lot of the like illness disability transplant oriented things I kind of got Forced into going to, like, transplant reunions and stuff, which was a very weird vibe looking back it's sort of just a lot of, posturing for Donate Life and, like, sticking sick kids in front of a camera [00:05:00] with, like, really inspirational music.
And it's just like, the vibes are super strange. Um, and so I really sort of felt like it wasn't something that was really mine to explore or to think about. It was something that both simultaneously like happened in the past, but was still very present, but in a way that felt very disconnected from my, my body and my being.
And it kind of just lived like that for a while. And then I went to college at 18. I went to UCLA and then I went to, came to New York and yeah. Yeah. Thank you for sharing all of that. We've talked together personally about your story and It's really interesting to speak to you and just to be in an ongoing conversation with you because I came to having my transplant when I was so much older and your perspective is different because you were so little and I imagined didn't even really understand what was happening at first and then growing up with it and coming to terms with [00:06:00] whether you want to even claim the word disability or how you view your body and, and you've been through so many iterations of it over the years from what you've shared with me personally.
And I'm curious about how, how it felt making the transition also from Going from being a teenager in Nebraska to then going to LA and, uh, I know you, you've made some work and written some different pieces and poems about, about that experience. And then now being in New York, what has that been like for you?
Yeah, I mean, it's been A huge change, a huge transition, I mean, I sort of spent a lot of my younger life like pushing away from that, like I said, and also like always hearing, Oh, you don't remember it. Oh, that's so good. And I think it is good in a sense, but I think it's really bad in another sense, because I think then like I have these [00:07:00] scars, I have these things that I still have to deal with on the day to day.
And like, I don't know where that comes from. I don't. No, I, and I don't have the opportunity to ask the questions all the time. And I recently did when I went back to Nebraska, which we've also talked about, but like, I kind of, there's just things that happen and I just kind of take it in stride and say, okay, this is, this is probably part of this, but okay.
Um, and I think it's really, it felt really difficult to see a path forward in my life when I didn't know how and where I came from in a lot of ways and how I got to this point, other than like my parents helped save my life, which is beautiful and also challenging, like also doesn't give me enough agency, even though I was young, but still dealing with sort of like the emotional repercussions and like ownership was kind of the first thing and I was not going to do that on my own.
But when I went to UCLA, it was during COVID still [00:08:00] and I am immunocompromised. I take medication for that to be so, um, immunosuppressants and in January of 2022, the Omicron variant of COVID was super, super high. And the chancellor of UCLA put out a statement basically that said, um, if you're too medically vulnerable to come to class, you should take a leave of absence.
And I sort of found myself in this gray area, which I usually find myself in of being like, well, you know, I could go to class, but it's not great. This isn't an ideal situation. If I get sick, I'll be maybe fine. Or also maybe not, um, and just like living in this really precarious sort of in between of, like, sickness and health, which is a really interesting, complicated place to be, I think.
And there was this protest that the Disabled Student Union was putting on, and I saw it on social media, and I was really interested and really impressed by it, but sort of was like, I'm gonna be impressed from afar. I'm gonna keep up on social media. I [00:09:00] will donate five dollars if they want me to donate five dollars or whatever.
And then they said that they were occupying the admin building overnight. Um, so they marched from the middle of campus to the admin building and they just kind of decided to stay and no one really told them they couldn't. And so I went for an hour and I really don't know what possessed me to because it was nothing that I would have done before that.
And then I went the next day. And then I went the next day, and by the third or fourth day, I bought an air mattress from Target and was sleeping on the floor, and like, it literally changed my whole life, because I think I saw these people, in this community, in this like, really powerful disabled community that were very alive, and I think my experience of disability up until that point and other people were that they were very not alive and that they were very sick and very much sort of their lives were taken over by their illness, by their parents, especially, and I sort of that was my [00:10:00] association with disability.
I didn't know that it was possible to be disabled and to be powerful or to be disabled and to be you know, a force of good in the, in your community, or like political change, and I think that was instrumental, and I think I, I saw a lot of myself in them, even though, our stories, most of them, all of them were very, very different, no one had a transplant, most of them had a physical disability in some sort of way, um, but I just, like, felt so deeply connected
to them in a way that I couldn't really explain, but felt so like, pure and rich and beautiful. And I had written a film during COVID to get me into UCLA that at the time was called Come As You Are, about an interabled queer couple who spend the night together for the first time. And I was like, 17 when I wrote that just like bored and sad one day in my, in my room and I, when I wrote Bored and sad.
Bored and sad. That's a big memory. Of my memo. Exactly. That's like COVID in a [00:11:00] nutshell. No, literally. No, but like, yeah. And I like looked at it afterwards, like when I was 17 and I was like, Oh, this is just a silly little work of fiction. Wow. That's so interesting. Cool. And then I kind of put it away and then after the sit in, I knew I was going to be moving to New York because I didn't like Los Angeles.
I didn't like UCLA. I think one thing I thought was so interesting about Los Angeles and UCLA was like even though I had grown up in this kind of homogenous place, I had never been stared at more than in Los Angeles when I wore whatever crop tops when I showed my scars.
I had never been like perceived so much in my life, which was something that I don't think mentally I could have handled being there. That's not the only reason I left, but it definitely wasn't a small part. Yeah. Um yeah, and then I, I reached out to a small production company in Queens originally for an internship, when I moved to New York, and they said they didn't have any [00:12:00] projects slated for that summer, so I asked them if I could pitch them a project, and I think at the time they were like, What?
Yeah, I guess. Pitch us a project. You're like 12. Um and I sent the head of the company the script, and she liked it. And she said, if you guys can get, or if you, just me, can get a pitch deck, some storyboards, and treatment together in a month, we'll talk. And I didn't know what that meant. Any of those words.
So I asked my friends, I asked my professors, they really helped me. And I made the whole package, I pitched it, and she said, great, if you can get the money together, let's make a movie. So I did a GoFundMe, people really supported, and we got this thing off the ground, and I think that sort of started the next part of the journey of really meeting more incredible disabled people that were artists and models and so talented and so beautiful and had progressed sort of already in their lives.
One of my actors is a bit older than me and seeing the things that she had done just fueled [00:13:00] this fire to keep going and that this part of me that I was so disinterested in exploring was the thing that I, has been my fire, sort of, and, and, and something that I found so beautiful and vulnerable, and still very difficult, but it's taken on this whole new, whole new thing.
Yeah. Yeah. And it, it sounds like This experience of being part of the sit in where you didn't really even expect anything clicked you into not only a new understanding about disability and how alive that community is, and also recognizing yourself as part of the ecosystem and igniting a fire of creativity within you and then getting something made and getting funding for it, which is not an easy feat.
No. Yeah. Yeah. I mean, it all feels a little bit like a fever dream, like since then. I mean, I think since COVID, but that's like a international, everyone says that. But if I could split my life into like a before and [00:14:00] after, it would be a sit in. Mm hmm. A hundred percent. Mm hmm. Yeah.
So we'll share a link to this really beautiful short film that you shared with me in the show notes. And your work really centers on these intersections of tradition, intimacy, embodiment, and disability.
And just hearing your story, explains in a way why you're driven to make work like this. But I'm curious about the consciousness around these themes. How conscious are you when you're writing something that you want to weave these different themes of embodiment, of disability, of tradition. I'm especially curious in the word tradition, uh, as it relates to your work.
And I know you're working on new, new ideas and, and new things all the time. So, maybe even just speaking to what you're working on right now. Yeah, I mean, I think in the beginning, I wasn't conscious of it, like I said, I sort of wrote this when I was in high school, [00:15:00] it was very, um, kind of haphazard almost, but I think now that I know that it's in there, like I think there's just a well that like there's just more and more and more that comes out and the more I think about it, the more other things I think about and the more other things I think about, then that like is a tangential, you know, has a tangential theme to another thing and I think it's now this like whole ecosystem and I feel like my mind is almost playing catch up with my body in a certain way of like, I didn't really have all of these years to really process this thing and I'm doing it now and I get to do it my own way now, which is really exciting and one of the films I'm working on now, we just finished post production and are submitting it to festivals, is about a girl who goes to her family's Passover Seder for the first time since being put on a feeding tube for chronic illness, specifically short bowel syndrome, which is what I had.
And it sort of, to me, has been this, reimagining of, like, what my life would have been if this was more prevalent during [00:16:00] this point in my life, but also reflecting on what it is and what it has been and my family relationships and how my family has calibrated around this situation and always has.
And how, if it was sort of more severe, how they would, and, and kind of just drawing attention to the like apparent connection between food and love in Judaism, but in culture in general and in tradition and sort of like what you miss out on when you not only can't have that in terms of food, but also can't have that in terms of whatever your accessibility needs are and how rigid
tradition actually is, that's why it's traditional, and I think not, not seeing myself in a lot of those stories growing up, um, with scars, with very complex medical history and wanting to, sort of, give, Other [00:17:00] people and give my younger self, like, things to latch on to, and like, if I'm thinking about it, so is someone else, I think, I hope, and if they're not, maybe they can start, and, um, yeah, I think also a part of it's, like, been kind of an unconscious, like, community building practice for myself, because, like, I think we've talked about this too, like, there aren't that many of us, They're just not, they're not, they're not here.
And I think making things that are somewhat connected, even though I haven't made a transplant story yet, but like somewhat connected tangentially, I think has been a way to just get closer and closer and closer to like the thing, to, to the community and to the people I did and still do like need to be around to kind of like fuel that, that part of myself.
. So you shared your short film Unholy with me. And I got to watch it before it's shared with the world, which I, I was so grateful for. Uh, and [00:18:00] it really encapsulates so well what you were just speaking to, because it, it doesn't focus on Transplant, like you said, but I found myself relating so hard to the main character, and it really encapsulates the humor and the heartbreak that can come up when you're sick and also dealing with family and she enters into this very, very precious to the Jewish community, the Seder dinner.
I'm not Jewish myself, but I related so deeply to the grandmother character. I don't want to give too much away, but people not necessarily understanding why she can't eat and just people not knowing necessarily how to act and this, the, also the, the painful reality when you're at. A seder specifically where the food is so delicious and people have spent so many hours [00:19:00] and poured so much love into the food that's on offer, uh, and not being able to partake and having to also explain oneself.
There's just so much in it. It's, you know, it's a 15 minute film, but there were moments where I was really laughing and then I was also crying and I love that type of work and there's a moment with Noah, the protagonist's cousin, where her cousin says, congrats on being alive and I laughed out loud.
So I'm just curious in the process of Writing it and then directing it and working with, with the actors on it, how it was for you, because it is a really personal story and what was it like, like, as the viewer myself, I was going through a lot of different emotions just watching it. It really touched me and I can only imagine what it was like for you working on it. Yeah, I mean. Thank you for saying all those things, that's so [00:20:00] sweet. Um, it was really beautiful, it was really cathartic. I mean, a lot of the lines from the family are direct quotes that people have said to me, like the congrats on being alive.
Someone said that to me last year at a film event after telling her my story, which is hilarious and ridiculous. And like, why would you say that to a person? Yeah. Um, but then you get to, that's the beauty of being an artist. Then you get to put it in a short film and hopefully she doesn't see it or hopefully if she does, she forgets.
But yeah it was a really beautiful, challenging thing and I knew that I had to get it right. There's a shot in the, in the film that has a medical device in it, I'm not going to say what or anything that was really challenging because we tried so hard to get an actress who used a feeding tube, but there aren't any.
And if there are. They're really sick and the problem with set and the problem with [00:21:00] accessibility right now is as until we start making this change in the industry is that it's very difficult to calibrate around sick actor. Um, and so we tried and we tried and we tried and it didn't work and I was going to cast my friend who is currently going through a similar situation, but she ended up hospitalized the week before and we were like, we kind of knew that that was coming a few months in advance.
So we said. No, that's not going to work. And my friend was going to be a body double for this one shot because she had this specific device. And then she ended up being hospitalized. And so we couldn't do it. And it was either we, I mean, what I thought was we either put the tube on the actor.
Who has never had this experience or we cut the shot and I wasn't okay with either so I did it so there's a shot in this film and the person that you see is me and that was really challenging. That was one of the hardest things I think I've done as a director because I put it right where [00:22:00] that specific thing used to be on my body and it looked Because of our phenomenal, like, makeup team, it looked so real, and I had never seen that in my conscious memory, and so it was this really strange somatic experience, and it felt very comfortable, which was strange, like, it it wasn't scary like I thought it was going to be.
It felt very familiar, which there was no reason, I mean, there was a reason for it to feel familiar, but I wasn't really expecting that but it was, I don't know, it was really beautiful to sort of like see a lot of these situations play out that like, not only had been in my head because I was writing it, but also had been in my head for years before that.
There's a scene in the kitchen, I won't give it away, kind of maybe isn't. The most appropriate, or says the most appropriate things. Um, As grandma sometimes do. As grandma sometimes do. And that whole interaction is a direct quote from my [00:23:00] grandparents. Every single time we go out to eat for the last 17 years.
Literally every single time. It's ridiculous, but it's hilarious and I think this is what, art is about is like being cathartic and it didn't really feel like a therapy thing for me, which was really good because I don't love when art is that I agree. I think I think because the actors were so phenomenal.
I think it was really like a like almost like a deepening process of seeing this thing that. Sort of has been my story. I mean, has been my story, but not exactly. Not biographically. Um, Yeah, the actors that you cast are just phenomenal. I'm very excited for people to see it when it comes out.
I'm very excited. Yeah, it's very, it's extremely relatable. And I don't see very much like it. Out there. So it's, it's a really important piece that I hope lots of people get to watch. And I think that's the thing too with like, As You Are, and also with this, and also with [00:24:00] my work, like, that I haven't intended to do, but I've gotten a lot of feedback of like, wow, I've never seen anything like this.
And I think to me, that's almost shocking because it's in my head so much. And I think about this stuff all the time. And I share it with my friends and I share it with my family. And like, it's sort of, our world. I mean, people in the disabled community, people not, but like, anyone who chooses to surround themselves with me, like, kind of is privy to this.
So when I get that feedback that it's, it's so out of the ordinary, it kind of takes me aback in a way that is a little upsetting, but also I'm very happy about. I'm so grateful I can contribute that to the world and to art, but also like, kind of sad that someone else hasn't done it before me.
Yeah, absolutely. And I, I recently. As I've shared with you, I've written a feature and we recently did a live reading of it and having people say, like hearing our lines back that we intended to be funny land [00:25:00] and sometimes our jokes didn't land and it's like, okay, well, why not? And, uh, watching this film of yours, the, the tone of the humor and what you're doing with how real it is.
Because being alive is sometimes really sickly funny, you know, and being sick is the same thing, and sometimes it's really heartbreaking and painful, and that is my experience of illness. It's, there, there were really hilarious moments, and continue to be, and, because that's just also part of being alive, and then there are very painful moments, and, uh, I think it's, You strike that balance really well and that's what I strive for and I think we, that's why we need to tell our stories and, and also Not make them into a therapy piece, as you say.
Totally, and like, I think so much illness media is so [00:26:00] sad and so, like, pitying and I know, like, in the worlds that we go in, like, of course it is, but like, I think a lot of people don't even acknowledge or, like, are able to clock how, like, Either painfully sad or, like, inspirational, and things are supposed to be, and I think finding the balance between the two is, like, actually the only way to do it, because it's just living, like you're saying, yeah.
It's really funny, you're reminding me, this is, this just happened this week, but I, I hired someone to, to make me some reels for this podcast, and it's a new person, and, I generally don't put music to the reels, uh, and out of their own volition, they added, they picked out, I, I meant to send them timestamps of the snippets that I wanted, which was my bad that I didn't do that, but in the first edit that they sent me, they [00:27:00] had They had attached the most depressing music to a part of the interview with this person that was also like one of the most graphic parts of the interview that wasn't actually that interesting, you know, um, and it, it was just, it was just remarkable to me, there's nothing, they didn't really do anything wrong because I didn't give them enough direction, but it was remarkable to me that they would choose to find the saddest music
and that just speaks to how we view as a culture, disability and medical stories, when it just isn't really the case. Totally. I mean, even in medical settings, every single time I walk into a doctor's office, I have, get some iteration of like, wow, that's crazy. It's like, dude, your one responsibility is to not do the thing that you just did.
Like, that's the only thing you're not supposed to do is make me feel like this is [00:28:00] horrible as a physician. And I, like, if they're not trained? That means no one is trained, which is just so absurd. And like, I think it's, I mean, there's so many kind of blind spots in our culture, for lack of better terms, um, but this is such a big one.
Like, I think we have a lot of room to grow in a lot of instances, but I think illness and disability are still not things that people are, are even thinking about. Like, it's on people's radar. Like, I, I'm a film studies student and I watch these films. A lot of them are older. Some of them are not as old, but The jokes that they have in them that our professor won't even acknowledge is bad like is shocking and no one is gonna bring it up and usually I do end up bringing it up, but it's just It's so surprising how long things like that have gone on and are continuing to go on until people like you and I are like stopping it in its tracks.
Yeah. Yeah, [00:29:00] like, hey, what's, what's up? And you have this line that I don't want to give too much away about your film Unholy, but Noa, the main character says at one point, nobody knows how to be around me. And I think that's what we're kind of circling around is. Is that people don't know how to be with and sit with illness.
And it's at this really pivotal point in the film and, and also relates to the wonderful title of the film, of like how, when, when the world is looking at you a certain way. And doesn't know how to be with illness. And I really think from the many, many, many hours of contemplation that I've done around illness, it, it faces people with their own mortality and their own
potential illness, and so it's sometimes not even conscious that they don't know how to be with it and I wonder in the crafting of that story, when [00:30:00] you came to write that, were you kind of thinking about how people are with you as you wrote that, or is that something that you've even maybe said?
To a loved one. How, like, how I guess my question is, like, how intentional was it that you're making a commentary on this thing that we deal with? Very intentional. Yeah. I mean, I think the, the doctor's office thing I just mentioned, that's a big one. I think, and we've talked about this, like, personally, I think people don't know how to calibrate their brains around a especially transplant I mean, I think every, like, all illness, all disability, I think a lot of also chronic illnesses that are maybe not as researched or understood, but I think the thing about transplant that's so interesting is, like, from what people learn, it's like, you're sick, and then you have a transplant, and you're good.
And I think in a lot of instances, with maybe less, like, obtrusive ones, I think maybe that is the case. I don't want to speak on it. I don't know. But I think in a lot of instances, I know in a lot of instances, it's not the case and I think people [00:31:00] don't know what to do with me as someone who looks very healthy and in a lot of ways is, and in some ways is not, um, and I think Like speaking about like this like gray area thing that I was talking about earlier, I think it's really hard for people to understand how to categorize me.
It's really hard for me to understand how to categorize me. I don't know. I wake up some days and feel very confident in claiming disability and some days I don't. That's a challenge, but I think, I think by doing the work I've been doing, I've been making people more comfortable with me and making people feel like they can be around me.
Um, and I don't think it's a conscious thing in the most people in my life, but I think also for younger people, like I am in my really early 20s, and I think a lot, most people have not had such profound illnesses and profound experiences with almost dying and I think, yeah, like you said, I think that's something that's really, really scary for people, and I think people either [00:32:00] This also relates to something in the film, but like, make it a huge deal or never speak about it.
And I think I've also found that a lot in like my interpersonal relationships and like romantic relationships. It's like, you can never really strike a balance between Like acknowledging it in a normal way, like it's really hard for people to be normal about this, which is so ridiculous because like we're walking around every day trying our best to be normal about it.
Yeah, yeah, and I really relate to that. Some days I wake up and I'm like, you know what? This isn't a disability. I'm absolutely fine. Why am I, why am I writing so much about it? And why do I have a podcast called So Life Wants You Dead? You know, like, I really do feel like that. And then other days it's like, well, actually I carry this with me every day.
Uh, and there's actually a poem that you wrote that really, really spoke to me about this very thing that we'll get into a little bit later, but [00:33:00] it's, That's why it's so, so, so important, I think, to, to make the work that you're making and to speak up about it. Because of this this really, I think, detrimental thing that we're told, you're good.
Because it, Discredits as transplant recipients, we're told, okay, you have this surgery and then you're good. Off you go because you are good. You are alive. Off you go. Great. But it comes at a cost. And there, there are things that one has to deal with on a day to day basis that doesn't necessarily get talked about.
Maybe there isn't space. The medical industry maybe doesn't have resources to support support you with and in speaking up and making work and Uh, and especially in making fully formed pieces like Unholy, you can reach more people. Totally. And I think, like, something that I [00:34:00] hear all the time when I explain my story is like, wow, that's terrible, but you're good now, right?
And it's like, wait, oh my God, people love Same, but you're good now, right? Yeah, it's like, what? Like, no? Yes? I don't know what you're lookinglike the sometimes? The sometimes? Are you good now? Are you? No, literally. Ithe congrats on being alive. I was talking to my friend, and I should've said afterwards, yeah, you too.
You always think of the comebacks in any situation. For me, I always think of the comebacks like three days later. I'm like, oh, shit, I should've said that. And I think the thing that I've come to realize in my situation, like there's 30 intestinal transplants done a year still ish.
I don't know if that's That's nothing. About 30. Approximately 30. That's nothing. That's literally nothing. And I was, I was in an interview with my old nurse coordinator for another project I was doing. Um, and she kind of said for the first time, like, You know, everyone who had a transplant, pretty much everyone who had a transplant around the time you did is either dead [00:35:00] or has never eaten again.
And I was like, okay. Thank you so much. I was like, okay, cool. I'm going to remember that forever and I'm going to keep it here. Um and I think there's, I think because of that, there aren't resources because I think they expect that everyone's dead, which is crazy. Yeah. Um, like I had to ask it like. An appointment of mine, like, oh, so do you think I might need another transplant in 20 or 30 years?
And the guy was just like, Maybe. I was like, what do you mean maybe? And he was like, we just don't have the research and I think that's fair. That's a very normal medical thing to say to someone. Of course. But like yeah, I think there's so little we know about so much of the illness space in general, whether it be transplant, whether it be something else, that It's really hard to help people in a medical sense, let alone in a personal, like, okay, well then, so what does that mean?
How do [00:36:00] you go on living a life like how do you plan a life for yourself then and I think that's something I'm thinking about. I'm about to graduate college. I don't think anything that's going to happen, but maybe it will. I don't know. And I think there's so little resources, but also representation of sort of this middle ground of like, I don't know.
Yeah, and outside of even a therapeutic setting, in having psychological support, like, the community aspect is really lacking. Totally. Beyond, honestly, a Facebook group. That's, that's, there's more than that. I don't mean to be glib about it, but it does feel lacking. I mean, I, I, I don't, I don't mean there's more than that.
There's not. Like, there's definitely not. That means very few. There's sometimes there's support groups organized by the hospital, but it's not, in my experience, there were never very many young people there. Totally. And like, if they are, they're like two [00:37:00] years out, five years out. Okay. What happens after that?
I don't know. Um, yeah. Yeah. And I think that's the thing that like has also I've realized in more recent years pushed me to do all this is in response to having no community, um, because A, maybe I will get some, and B, maybe other people will, and that's, that's the dream, and I, I, I did a documentary about, a girl, or multiple girls with complex stomach issues in Omaha that are currently there now, and, like, that was sort of the closest I've gotten to community, because They were all on TPN, or they are all on TPN, which is weird and trippy.
But like, that's still not it. Like, I love them dearly, but that's still not it. And I think it's gonna be like a lifelong process of like, where is everyone? There's actually a really beautiful documentary that I haven't seen, I really want to, called Is There Anybody Out There? I think, were you telling me about it?
Okay, it's this disabled woman who has a very, very, um, rare [00:38:00] condition, who kind of asks this question throughout this film of like Is there anyone else like me? And I have, I haven't seen it. It's been on my list. Um, it was at all the Disability Film Festivals this past year. It was beautiful apparently, but like, I, I've been thinking about that and I think also for young people, TikTok, let's say, is a huge resource.
Yes. I've tried. I've looked at TikTok. No one is healthy on TikTok, on transplant TikTok. Um, Which is also a little disheartening, but I think also it's allowed me to kind of inadvertently be a, like a model for people. And I don't think I asked for that, but I'm, I'm okay with it. Like, if it's going to be someone, I'd rather it, I'd like it to be me.
Yeah, of course. And generally when you become a role model in any sense, You're not necessarily asking for it, but it's sort of what life asks of you. And it's so interesting to hear what you've been searching for and the community that you're looking for, because that's really what, why I started So, Life Wants You Dead.
[00:39:00] And In this kind of initial quest for community and finding other people with similar stories. And that's why I love doing it so much, because there is this thread, no matter what the condition is, of course, you and I have a lot to relate on because we're both transplant recipients, but I speak to so many different people, and there's always a commonality, and that's also just the human experience.
You know, and you mentioned something earlier about living in L. A. and feeling like you were stared at, or being, not feeling like you were stared at, and I wondered if you would read this really beautiful poem that you've written called Ode to the Stairs and the Stared At.
Ode to the Stairs and the Stared At, did you see that person gaping at you? And I'd answer, what person? Eli Clare. A feeling of being watched, but only for a moment. Look, then look away. [00:40:00] Not too long. Your eyes travel up and down or across. Whatever way follows the path of abnormality. Not trained in the art of looking at our bodies, you gawk at the very fact that we are present.
Crossing the street, on the train, in the deli, we're forced to wear our stories on our flesh. More of a body than a being, we belong more to you than to ourselves. We let you take in our broken parts, our scars. We let you drink in our limps, our bent limbs, because it is easier to let our eyes avert your gaze than to acknowledge that we do not have the privilege of anonymity.
We are your oddity, your personal circus, your reason to be grateful today. Our first perceptions of ourselves are in your image, seeped into our bones, becoming the marrow. Frankenstein, invalid, freak. You corrupt our worthiness. Before our lovers can take us into their arms, make us believe that they want us, all of us, [00:41:00] we look away, pretend that we didn't see the way that you taught us to.
Thank you for reading that, listening to that poem. I just, I'm struck by what we were just talking about in regards to community and, and looking for, for people to connect with. When I first read it, even just the word Frankenstein, that's something that I felt myself about, about myself. Uh, And, and years ago and, and when I was really sick and also just kind of carrying myself through the world and dealing with maybe not even someone physically staring at me, but the reflections that come back from people and feeling like an oddity.
And I think about how much disabled people, especially when [00:42:00] someone has a visible disability, how much. Disabled people carry, and the views, the judgments, and this oftentimes unspoken language that people can speak with a simple look. I'm wondering how you carry that today because you obviously think about it so much and How you interface with how you carry yourself through the world with your scars and with your body as it is.
Yeah, I mean, that poem came from a specific experience. I've been running a fair amount just for fun. And I was running in Riverside Park and I almost caused a bike accident because a guy was on a bike and was riding and saw me and started like veering his handlebars into a, into like my direction
'cause that's what happens. Mm-hmm . [00:43:00] Um, but almost hit a car and I was just like, shocked. I was like, really? Um, because like, I think it's this really interesting thing because I know. A lot of disabled people at this point. And I, not, this is kind of a dangerous game to play, but in comparison, not that I like to do that, my body looks very whatever normal is
it I have scars that look slightly more abnormal because I had to get restitched after my transplant, and there's kind of a lot of them, but It shouldn't be that big of a deal, but it constantly over and over becomes this big deal. Um, and in writing that poem, I like, took my experience into account, took my friend's experiences into account, and like, the Frankenstein line, like, I've been called that on Hinge.
And like, Really? Wow. Yeah. And like, even just yesterday, someone responded to me and was like, looks like someone almost killed you, lol. [00:44:00] What? That's crazy. That's crazy. That's crazy. And like, and then was like, Oh, good shit. And I was like, well, okay. Um, and like, I just, I think it's interesting because I, I experience.
I don't know. I think, I think my body image is very weird and fucked up because I think I experienced the things I experienced in the world are that of someone that has a very different body than I think I do and I think that disconnect is really strange And also the disconnect of I get to choose when I subject myself to this and if I subject myself to this that means that I am being true to myself but if I don't and I keep myself a little more sane then I'm hiding then I feel like I'm hiding some part of me and I think that's a really weird mind fuck a little bit And I think I think it's a [00:45:00] process.
I think it's a challenge and I think everyone especially in like the dating world. I think every time I get that, it's not a common occurrence, but it's not an uncommon occurrence. It's just a little like places you like one ring down on the self esteem chart. Cause also, I spend so much of my life now trying to be empowered in this experience and be kind of like embodied and I think it's actually really hard and I think there's a disconnect between the work one does or the work we do and the actual somatic experiences we feel and I think my, my dad is amazing.
My dad's a therapist and he always is like, yeah, the, the lifelong goal is to. Intertwine those two and to kind of integrate those and I'm like you're so right, but how?
But I think it's true and I think I think being disconnected from your body is a survival mechanism and it's something that I employ maybe more often than I should and I think in situations like this But then then beautiful art [00:46:00] comes out so that's hard because like I do not think all art should be derived from suffering but also it makes good art sometimes.
Um, yeah, yeah, yeah. And that disconnect is is necessary sometimes for survival. And also, it's funny because sometimes I feel I too have this this kind of disconnect of like, I think I know that I'm hot, right? Like, I walk around being like, Oh, I'm really hot. Like, great. Cool. As you should. And, and also, there were moments a few years ago on Hinge where I, I had, I kind of like said something about having had a transplant and then having people respond in a similar way to what you experienced.
No one ever said Frankenstein, but very similar kind of vibe. Um, and kind of being faced with that difference. Uh, And also the truth of who I am and how I feel about my body. And [00:47:00] it's just a strange thing to kind of have to be in a relationship with. And because you just mentioned embodiment, I wanted to ask you about another poem that you wrote.
That's, uh, we'll also put in the show notes. It's called On the Eighth Floor of Mount Sinai. And you have a line that, as an organ recipient myself, I identified with so much. It goes, Our quiet was interrupted by a nurse coming in to administer her evening meds. First, though, she had to flush her line.
I closed my eyes, visualizing each step by sound and smell alone. Sanitize the cap. Insert the syringe. Unclamp the line. Push the saline. And as I read that, I remembered that feeling so viscerally and it's been a while since I've had to have my line flushed and it made me think about the somatic experience of reading and writing poetry and in digesting [00:48:00] art in general, what it evokes in us as the viewer, the reader, and when you're writing poetry, how much of your body do you bring into it in the like specific act?
I think a lot. I mean, I think with that, like you were reading it, I could, like, smell it. Mmm, the smell. I always loved the smell. Oh, that's crazy. That's insane. That is insane. I can't handle it. Um, Yeah, I don't know. I think a lot, um, that poem, one of my very close friends who was also involved in a project I was working on, um, had, was hospitalized for, like, months, and I was visiting her and the poem is about going and visiting her and sort of kind of selfishly kind of trying to heal myself in the process and trying to get back this sort of image of what that was, um, when I can't remember certain parts and then you go in and then you [00:49:00] have this experience where you're like, Oh, I remember that.
Um, So I think, I think you have to bring your body into it. I think there's no choice not to, even if it's hard. And I think there's a lot of things that you can elect to not bring your body into, which I love to do. It's my favorite thing. Um, but I think, I think writing, I think if you're going to make good work and make truthful work, you have to, no matter how, no matter how painful that is.
I think also that's something that I talk about a lot with my other, friends who have had similar situations, I mean, not that similar, but like, I have a group of friends who I interviewed for this film who have very complex chronic illnesses, and it's sort of like this kind of beauty and vulnerability story.
And pain in having to be faced with this over and over, whether it be in writing, whether it be in the medical space, whether it be both, whether it be if you're in academia, um, but like getting to sort of approach it [00:50:00] in some ways on your own terms, and I think that's another thing that I, for my writing and for my film.
I've really tried to do because for so many years, this has been other people's experiences, whether it be my parents or my physicians or my organ donor, which is now we can't get into that. But, um, whatever it may be, it wasn't mine. Um, and neither is or was my body, I think, in a lot of ways. Um, and I think my work, I can kind of yeah.
Do that and put myself back in, in the narrative, so to speak, when I actually get to get to write it. Yeah. Yeah. You'll have to come back and we can talk about the death of death of it all. Um so we're gonna close out and we have three questions that we always ask our guests. If you lived in a world that completely catered to your disability, what would that look like?
Um, I [00:51:00] mean, I think an actual like access needs way, just like a lot of bathrooms would be nice. New York City public bathrooms would be the dream. Mm-hmm . That's a good one. Yeah. What's one thing you do to keep yourself creative each day? I try to write a little bit almost every day, um, or like take a picture or do something kind of creative, um, I have a lot of journals and a lot of notes apps with like half baked thoughts.
I notes app the shit out of my, out of my day. I usually try to write at least one thing, one phrase. What's one phrase or saying that you always come back to? Um, there is a phrase in Hebrew that's l'chaim, which means to life. Um, and I have it tattooed on me.
Beautiful. And I think that, I think just like continuing to live large and live like radically, um, in spite of everything. Um, yeah, and in Judaism it's like a, it's a celebratory, um, [00:52:00] statement, so. L'chaim. L'chaim. L'chaim. Thank you so much for being here with us today, Daly. It's such a pleasure to have you and you'll have to come back.
I'm really looking forward to seeing all the work you you continue to do. All right, thank you so much. That was our show So, Life Wants You Dead.
Our illustrations are by Ronaé Fagon. If you like what you hear, please subscribe, leave us a review, rate us on Apple Podcasts, Spotify, or wherever you get your podcasts. You can find us on Instagram @solifewantsyoudead, where you can follow along for updates about the show. Thanks so much, and see you next time.