Ehlers-Danlos Syndrome: Charlie Fitz On Using Art to Reclaim the Medical Narrative

Nora Logan: 0:03

This is So, Life Wants You Dead, a show that explores the intersection of illness, disability, healing and creativity. Seven years ago, I was told I would need an emergency organ transplant. Before they put me under I close my eyes and imagine myself writing. Now all these years later, I can say, that was honestly what saved me. Well, in a brand new Liberal, I'm Nora Logan, and this is a podcast on how looking at death helps you live. Today, my guest is Charlie Fitz. Charlie is a UK based sick and disabled artist and writer. Since becoming sick, Fitz has turned to her art practice as a meditative process, a form of disability activism, and as a means to understand and reclaim her experience of illness, and trauma. On today's episode, we talk about Charlie's experience with Ehlers Danlos Syndrome, her time in hospital, having to outsource care, her mental health and her art practice. This conversation was a long time in the making, and I'm so happy to be able to share it with you today. content warning, we talk about death and suicide in this episode. If you or a loved one are experiencing suicidal ideation, or need support, please reach out. You can find resources in our show notes. Here's the conversation. Well, welcome to So, Life Wants You Dead Charlie, how are you doing today?

Charlie Fitz: 1:35

I'm good. Yeah, I'm good. I'm happy to be here.

Nora Logan: 1:38

I'm so happy you're here. This has been a long time in the making. We first spoke in the summer of 2020. So I'm we're speaking in the summer of 2022. So it's really good to have you on the show. You've written about disabled joy, rest and rage as resistance. What's something that brought you joy this week?

Charlie Fitz: 2:00

This week, it was actually my birthday. And I came to London for the podcast, but I got to go and stay with friends and just have dinner with close friends, which is not something I've been able to do for a while because of pandemic and shielding. So that brought me a lot of joy.

Nora Logan: 2:16

Happy birthday.

Charlie Fitz: 2:17

Thank you.

Nora Logan: 2:19

So can you talk a little bit about what it has done a syndrome is and how it's generally treated just the ins and outs of it for people who don't know.

Charlie Fitz: 2:29

Yeah, so Ehlers Danlos Syndrome is actually a group of at the moment 13 known conditions and their connective tissue disorders that connect there. They're all characterized by kind of fragile skin, hypermobile joints, and tissue fragility throughout the body. But each individual type has like different general characteristics. And most of them have a known genetic origin. I have classical Ehlers Danlos Syndrome. And I also have the gene mutation for another similar condition. So all my joints are affected, I can kind of have a dislocation anywhere in my body, my spine is quite severely affected. So I've because I have an unstable spine that's affected my neurological system. And I've had to have a neck fusion, I recently had to have another surgery on my lower spine, and then also a few of my organs because of the tissue fragility throughout my body, a few of my organs are affected. So my gastrointestinal system, my gynecological system, my bladder, my heart, yes, like a whole, it's like a body body wide illness, in terms of treatment in the UK, from my own experience, and from the experience of everyone I know personally will need Yes, the treatment is lacking. So we have one clinic, which has a three week inpatient stay, and they supposedly invite you to stay at this Kamek teach it do physio with you and teach you how to manage at home. Now the condition affects in terms of severity affects people on a spectrum, some people, it's quite mild, some people, it's very severe. Every time I've tried to get into this inpatient stay, which I've had really mixed things about. They've always said I'm too complex and too severe. So at the moment, I don't really have any treatment on the NHS for my condition. So my treatment is me researching fundraising and seeing private consultants around the world who specialize that's how I get treatment. I don't really have a GP who understands my illness or any kind of consultant who oversees my care,

Nora Logan: 4:25

So you don't have anyone close to home that you can reach out to now. Wow, that's crazy. Yeah. And it's speaking of fundraising. You had a surgery in Spain recently which you fundraised for. Yeah. Can you speak to that process a little bit and what it's like kind of detract have to travel for treatment?

Charlie Fitz: 4:47

Yeah, so if my surgeon in Barcelona and his whole clinic I like one of the places that I do feel like I can reach out to not just for not just for neurological advice, but kind of anything because they've developed a really good support network for people with our conditions. They know all the different specialists. So the process of seeing him originally, as I've seen him twice for two different surgeries was a really unusual one because I was before my neck fusion, I was completely stuck in a bed, I had full time care, I was struggling to breathe, II speak, I think it was having seizures, I was having periods of time where I would forget who I was, or forget who my husband was, I bet my husband wants because I didn't know who anyone was. And I was, I was going to die in the UK, they said that they would put me on palliative care. So they would just give me medication essentially, to like, make them more comfortable. They didn't really recognize anything needs to be done. And so we fundraised, which was really unusual experience, because I was grateful. But I also felt extremely, like ashamed and guilty about having to ask family and friends and strangers for money. And also I was made feel as I was making this decision. So if I had another condition like cancer, and people would expect me to go for whatever treatment was recommended to me, but because I was going outside of the NHS, a lot of people didn't understand it, and made it seem like I was choosing to have this really unusual treatment instead of just trying to stay alive. Right?

Nora Logan: 6:16

When your options are going into palliative care. Yeah. Or seeking treatment elsewhere. Yeah, it's pretty wild that people would react in that way. But it's sort of a choice because palliative care is doesn't feel like that's an ideal option.

Charlie Fitz: 6:31

Yeah, I was in my 20s at this time. So it's when there is there is someone who is operating on people like me, who says that there is an option that will help. So we had the fusion only after having the fusion did this clinic I mentioned earlier, one of the doctors at that clinic said that those surgeons have saved your life. And this doctor has written out in a letter that you made the right choice, this choice is just ridiculous. They saved your life. They we should be studying these things. But we're just not in the UK. And one doctor on the NHS has admitted that to me, but the rest kind of just keep quiet about it. Or say that it's too risky to do the surgery. So it's a really unusual experience.

Nora Logan: 7:13

And surprising because I feel like the NHS is fantastic for certain things. And then for others, it really is lacking. Clearly with Ehlers Danlos Syndrome, it's really lacking. Yeah, but because it's so good for other things, people are shocked. Yeah, I feel like that's sort of why people might be like, Oh, it's a choice for you to go elsewhere. Because the NHS is held as this sort of bastion of we're so lucky to have that NHS type thing. But then it's so lacking in really serious cases. Yeah.

Charlie Fitz: 7:48

And I think it's, I mean, I think it's a mixture of so many different things. It's not just a funding issue, because that because I'm I'm like as left as it gets. So I'm like a great believer in NHS, but it has been kind of destroyed for the last 10 years or so, which is a whole other podcast. But it's not just the underfunding and under researching and all that there's more to it than that. Maybe because it's a condition that predominantly affects women. Because it's such a complex condition. I also think there's a lot to do with in the UK, we don't have any specialists of Internal Medicine. I don't know what they call it in the US. But in Barcelona, they call it internal medicine. And that means like whole body medicine. So conditions that go past the barriers of what we've told medicine go past like urology, or cardiology, or they don't sit nicely in one clinic, we have the same in the US. We don't have any specialists. There's no one who studies that destinies conditions like that. When I am in Barcelona, I have an internal medicine specialist who studies conditions like EDS that affect the whole body. They know that I'm going to have 10 comorbid connected conditions because of the way affects my body. Whereas in the UK, if you have a list of 10 diagnoses and you're young woman with a history of trauma, the it's all in your head, psychosomatic illness, hysteria, light is flashing in their head.

Nora Logan: 9:10

And it becomes is this person to be believed that's the treatment rather than, Oh, let's get to the bottom of this, which is how it's clearly it's treated in Barcelona.

Charlie Fitz: 9:21

And I don't think and prior to me, I said I study medical humanities prior to me studying Medical Humanities, I would have probably said to you that this is coming from a completely malicious place. I actually don't think it is now. I think it's coming from a place in which ideologies about certain types of medicine in this country, like psychosomatic illness are still so strong and so heavily believed. And there are specialists in this country who are so well respected writing books about psychosomatic illness, that it's just like really dominant still. Yeah, they're just calling it something else. It's like, hysteria didn't really go anywhere. They're just, they're just they've just renamed it repackaged it.

Nora Logan: 10:01

And it's just passed down through the generations. And now it's become culture. Yeah, actually, to that point, it's part and parcel of the same thing in your article. It's all in your head, the dangerous legacy of the sick role. You write about being a patient, and this idea that we have to as children were cared for and protected. And then when we grow up, we need to contribute back to society. Would you read an excerpt from that?

Charlie Fitz: 10:30

Yeah. So this excerpt I'm referring to a guy called Talbot Parsons, who was a kind of conservative sociologist and his his idea of the sick role, which he wrote about in 1950, which has been kind of negatively influential on our culture and our medical systems. So it says, throughout childhood, we rack up a sizable debt to society. And as adults, we must pay back this debt by working, earning and being contributing members of society. If we become ill, we enter the sick role, which whilst being a deviation entitles us to some concessions, such as a break in our work our studies, or what he terms normal activity. However, in return, the sick person must submit entirely to the doctor in order to get better, which must be the only goal for the sick person. And it's

Nora Logan: 11:22

sort of ties in with this idea of these psychosomatic illnesses and not being believed you've written a lot about these issues, because then, and I so appreciate your writing. Because it's, it's something that we really don't see very much people don't write about this stuff that much. And you've written about this edict you're too young to be sick, which is something I heard so much in my own hospital experience. And I think it's really common for people to hear from medical professionals, you're too young to be sick. Can you tell me a bit about this trope and and also what this idea of the sacral means?

Charlie Fitz: 12:01

Yes. So when I was first, I mean, there's no like, there's no beginning to my illness kind of narrative. Because now that we understand on my conditions, there's always been signs since I was born. But when I was first in hospital for a serious illness, it was a pulmonary embolism, a blood clot in my chest. And I went to hospital three times before I was believed, because they said, You're so young, your chest hurts, it's going to be just like hanging over for a chest infection, the idea that being means that you're not going to have serious illness is ridiculous to me. And in terms of the sick role, the sick role is this idea that was written about in his book called the social system from the 1950s. And medical students, as far as I'm aware, used to actually study this. But now it's it's not something that studies anymore, but it's just sewing, in my opinion is so ingrained in society. And so the idea is that chronic illness does not exist in the sick role, you are healthy as a young person. And then at some point in your life, usually when you're older, you get sick, but because you've been a contributing member of society, because you've, you've worked and you've paid into the system, and you've done your bit, you are entitled to treatment, and to some time off of like being a regular performing member of society. And then you either get better or you don't, but you don't continue being ill, you either get better or your life ends. Those are the kinds of options in this role. So there's like no place for chronic illness or really disability in that kind of system. And I think that from my experience that's really fed into culture. There's a writer could Arthur W. Frank, who wrote a book called The Wounded Storyteller. And he spoke he was he was a cancer patient. And he spoke to loads of different people with with different illnesses. And he found that their stories would fit into lots of different narratives. And one of the narratives came kind of straight from this sick roll, like people continue to tell this, their illness story is like, well, one day I got sick, and then it goes through, then I got treatment, and then I either got better, right? Or I didn't, when it doesn't work like that. It's so much more complex than that. But we because how we see on this as represented in the media, how we see them represented in television shows, we're always trying to like put them into these kind of these neat narratives. And it just doesn't work like that in real life. And so many people that I speak to, especially young women are told when they go to hospital when you're too young to be sick, or you look too well, or the most horrific one is that you're too good looking if people say that, really. So it's like this really strange cultural phenomenon, that I should be able to look at you and see that you're unwell. It doesn't work like that. I think my mum actually has said to a doctor before Do you have X ray vision? Yeah, honestly. So I when I first was I mean, my illness story doesn't really have like a clear narrative because I don't think most people do especially if you have a complex illness. And even if you don't have a complex illness, if you have something like, and I'm gonna keep doing this cancer is the obvious one, because everyone kind of knows someone who's had cancer and and can relate to that cancer stories. Even if you have cancer, and you have cancer treatment, most people after having cancer treatment, then have chronic conditions, because the cancer treatment is like a, like a poison, right? So even in those stories, it's not as simple as it's made out to be.

Nora Logan: 15:26

There's also in regards to this thing that people say, of you're too young to be here, you're too good looking you. It's unbelievable that people have actually said that to you not because you're not good looking, you're very good. But it ties into the advocacy and the energy that one has to find within themselves to if they're not receiving a diagnosis receive a diagnosis. And it incenses me, actually, because there's so many people who if they're living with chronic illness, maybe don't have the energy to continuously advocate for themselves, and to take it at face value that, you know, someone might be told, Well, maybe you're just tired, you're too young. What was the other one? You said, You're too young to be sick, you're too good looking to be sick. It was a third one, I can't remember. That's okay. To go away from an appointment with a GP or consultant and say, Oh, well, yeah, I guess, I guess I'm okay. But I still feel terrible. And then maybe not be able to find the energy to find out what's wrong with them. under percent.

Charlie Fitz: 16:40

I've tried to Will my illness away at times, and I'm someone who is kind of fairly strong willed. And I have respect for doctors. But it's not like I'm in a cultural position in which I have the utmost respect for the medical professional. And believe them as though it's the word of some almighty being right? Like, I'm not in that position. And still, because I've been told this so many times, I think, Well, maybe if I just live a normal life, I'll be able to, and it doesn't work, because it's not in my it's not something that I'm manifesting. It is an organic illness that's affecting my body. And I think before I studied Medical Humanities, I would have always said to you, like, this doctor is just, they just don't want to deal with me, they just don't want to take responsibility for it. But since studying Medical Humanities, there is such an inter weaving for so many issues going on. Number one, doctors are taught that they should know everything in my course, there are doctors in my course. And they are at their wit's end, because they're taught that they should know everything, and that medicine is complete. And it's not, there was so much we do not know about the body, especially the stomach, stomach is like a second brain. And they say it's like the deep ocean of the body, there is just so much to discover. So yes, psychosomatic connections are real. And the way that we're feeling and things that happen to us do affect our body, but the way in which we understand them at the moment, is not good enough. And the way in which it's treated at the moment, it's not good enough, because people are treated as though they're making it up, rather than that our body is way more connected to what's going on in our lives, then, you know, I mean, yeah, well,

Nora Logan: 18:14

it's that that the fact that stress has an effect on our body, the fact that everything that's going around outside of us has really has a physiological effect on it is not accepted wisdom in the medical profession. And we it's an ever evolving thing. So for, unfortunately, the way that it sounds like doctors are trained, although I don't know because I'm not a doctor myself, it's that they're told that they have to know everything, when actually we know we know that medical research is still is an evolving process. And it's going to change over time. And like you say, with studies of the microbiome, we're just like, we've done a tiny fraction of, of what we may know eventually. So when you're in a situation where you're having to be in continuous contact with the medical establishment, I'm actually curious to know how you feel about this because as someone who's in continuous relationship with the medical establishment and will be for the rest of my life, I go between these two feelings well actually many feelings, not just two but but I have I got oscillate between having massive respect for them and for having been under their NHS and also in the medical system in the US massive respect for what they do and how they've helped me and and then also really seeing the shortcomings of the system and the doctors that I deal with and sometimes feeling like I'm not even seen, and I'm curious to know how you just from having read your work and seeing your artwork, I know that you have similar feelings of like, I have this respect for this person who's helping me but also I can see the shortcomings. For myself. I find And a lot of frustration and not being able to really voice the frustration and be heard. Do you? How do you deal with that?

Charlie Fitz: 20:07

Yeah, so I have voiced frustration in multiple situations. And that's when the, my treatment plan has quickly switched into, okay, this is psychological, because this, this patient is irate with me angry with me, they're getting frustrated, they're obviously this can't be because they're very ill. And they've been treated badly by the system. This must be because they're a difficult patient, right. And they're ticking the boxes that I've been told to look for young woman comes into hospital a lot, etc, etc. So I stopped doing, even though I don't, I don't advocate for that. I think it's all situational. And I take it out on my artwork. Because I just don't have the energy to go to hospital and fight with doctors,

Nora Logan: 20:50

Well speaking of that you have an artwork, that's a photo of a man who is seemingly playing the doctor roll in front of a woman and written next to the photo other words, it is not your fault, but you must repay the debt three times. And then as the text gets smaller on the fourth line, not is crossed out to make it it is your fault, but you must repay the debt. On the fifth line, it says it is your fault, you must repay your debt. And on the final line, it says it is all in your head, can you talk a bit about this piece and how it plays into this idea of the sick role, and also the guilt patients feel that's both projected onto them, but also just a natural feeling that can arise from being in the system.

Charlie Fitz: 21:33

Yeah, so this piece, I think it's almost like it could be read as the experience of there's just one particular hospitalization that I have in my mind. And the beginning is the kind of doctor trying to do their best trying to go through all the different scenarios with you. And then it gets they get more frustrated, and they are coming up to dead ends because you're more complex than they've been taught to understand. And then eventually, their frustration is being taken out on you. And I think that this happens a lot. And then at the very end, you feel as though you've let them down by not being perfect model patient who they can fix, and you feel like you're causing it somehow. And I think that's what this piece is kind of speaking to that really strange relationship in which you're trying to almost please the medical professional by by being someone who they can fix and solve, which just isn't always the case, a lot of the time, they're not going to be able to fix you, they're not going to be able to make it better. But if they actually started listening to you, and stopped looking at you as someone to be fixed and started listening to you and say, okay, so we can't fix you about we make your life better. What do we know, is your day to day struggle? I think that that would change a lot of outcomes. To me. Definitely.

Nora Logan: 22:50

Yeah. And what does it look like to support you within your illness and within your condition, rather than trying to fix it wholesale, when that's not really an option for many people. I remember when I was when I had a mystery illness, and the symptom was liver failure, but they couldn't figure out what the origin of it was. And the amount of frustration that I received from doctors who were trying to save my life. But I felt badly I felt guilty that they couldn't figure it out. And even a couple of years after my transplant, when I was still very sick and going in and out of the hospital all the time. I ran into an infectious disease doctor who really he he was very upset that he couldn't figure it out at the time. And he had done a biopsy on my my old liver, he took it out and tried to figure out what the disease was that I had, if any. And he in that short interaction of running into him in the street. He just he just looked at me wide eyed and shook his head. And he's like, so they just never we never figured it out, did we? And at that point, I've gone through a lot of work on my own to kind of accept that I wouldn't ever know what it was that caused me to get so sick. But I find still today that it really bothers other people more than it does me. Yeah. Do you find the same thing?

Charlie Fitz: 24:21

100%? Because I yeah, I think it's a real big issue with the way that we're training medical professionals and the medical professionals that come on my course the medical humanities course they have taught a few of them have told me that they kind of get mocked by other doctors for being on this course and for being interested in, in this kind of side of it and which is teaching them how to view patients as human beings and teaching them where their stigmas come from and teaching them that they don't have all the answers and that's okay, but how can they give good care so that is seen as a negative thing in a lot of the mainstream medical institutions which is just shocking beyond And I've had conversations with fellow students about how they're taught to operate on people and how they're taught to view people. It's kind of objects, because that makes it easier. And I'm not trying to downplay how difficult it is to operate on a human being, I can't imagine doing it myself, we're going back into that I have utmost respect for this individual. And I don't want to bring them down because they did it there. But at the same time, you have to recognize the shortcomings in your profession. And I think

Nora Logan: 25:25

That's, that's where people fall short, because the training is clearly you're taught to not recognize the shortcomings. And it's a unique thing for doctors to want to go and study Medical Humanities, which

Charlie Fitz: 25:38

Extremely unique. If I could just have doctors who chose to go on that course, that would be amazing.

Nora Logan: 25:43

That would be amazing. Because it because your patient care will go up tenfold 100 for the event, because you'll suddenly see the patient as a full human being. Yeah, and for myself, I felt like I worked really hard to be humanized to an extent that I look back and feel like I was a bit psychotic, you know, and even still, I tried to introduce myself and have them know my name and learn their name and really try to make it more of a human experience. But patients shouldn't have to take that labor on. Is that something that through the course of your all your treatments, but like you've you've also picked up or have you come to a point where you kind of just you know how you're going to be in a certain moment, like you're not not always trying so hard, is what I'm saying. Just because I only say that because you seem like a very level headed person who's

Charlie Fitz: 26:36

I'm level headed in this nice, nice room with a nice understanding. Yeah, I definitely am not in like, I just unless I unless I thought my life was in danger. I just avoid UK hospitals at the moment. So I'm probably not in like the best, I haven't come to a like a really positive place with it. I would say that it's not they haven't when I'm in Barcelona, I have still experienced doctors who will speak to the man in the room rather than the patient who will start touching you and grabbing you without definitely not my surgeon, my surgeon is he's just a sweetheart, he cried the first time he saw me like walk after my surgery. He's just a sweetheart. There's just I can't I don't have any bad words to say about him. But some of the people that he has had to work with over the years will still do all these kind of things where they treat you like an object rather than a human being. To some extent I do what you do. And I try and remind them that I'm there. And I try and learn about what's going on. And to some extent, I just let it happen to me and I go into another world. But I only feel comfortable doing that when I know I'm under that surgeon in that place. I think if I was in the UK, again, I haven't been hospitalized in the UK for many years. And I hardly have any medical care here, which is not really a good thing. I need medical care. So I think I'm just in a place of avoidance, which is not something I am advocating for. Yes. Just like the total honest answer. My mental health got to the point where I just needed to just completely have no interactions with medical professionals and the ones that I have had have just gone nowhere. Which is a really sad state to be in with the NHS. Yeah,

Nora Logan: 28:12

I mean, especially when there's so many good things about the NHS, it's such an you're a big believer in it. Yeah, it's a shame to not be able to use it. Yeah. So your exhibition, radical acts of care, is inspired by Johanna headphone sick woman theory, which states that the most anti capitalist protest is to care for another and to care for yourself. Can you tell me a bit about this exhibition and the origins of the project? They're resulted in some really beautiful pieces of work.

Charlie Fitz: 28:42

Thank you. So yeah, the origins of this, it kind of came together quite organically because my husband, Oscar Vinter. He's also like an artist and a creative he was he is my carer, he cares for me. And at the time was caring for me full time, I had the option of getting carers, but it just wouldn't have been enough hours for what I needed. And so because we're both creative, we created this really natural, continuous collaborative process. We were just writing together, we were taking photos together, we were making pieces of art work together, just in our day to day lives. And I started to think about how really famous artists, they'll have loads of people working on a big piece, but they'll be the only ones credited, and there were things that I wanted to do and things that he wanted to do that required assistance. And I thought that that really honored what Johanna had was work was talking about that honor, this kind of shared vulnerability, shared fragility in which yes, he's doing most of the physical labor because I was the one who was physically sick and physically disabled, but my husband is neurodivergent. He has autism. And so I'm often doing other types of labor within our relationship, but it's all kind of shared and it's all consensual and it just works really well. Our relationship sounds kind of pigheaded, but it does, it works really well. And so we began making these pieces around this idea of turning this idea of radical acts of care into artworks and into in the next, an exhibition. And then we originally we put on the exhibition at a restaurant that we used to work in to fundraise for my first surgery, and then it kind of just like snowballed from there. And it's become kind of just an approach to work. Sometimes I make solo pieces, and so does he. But there is often an element of collaboration. And I always want to honor it. And I always want to credit, give credit where credit's due. If a piece is made by a group of individuals, I don't know why the group of individuals who've all worked together, it kind of like it's kind of like a blueprint for how I want society to be right.

Nora Logan: 30:47

Yeah, and collaboration is also care, right? 100%. So creating something together, it is so funny, I never really thought about it like that, with these huge artists, really famous artists having, or you think about Leonardo da Vinci and having, you know, 100 people working for him, but it's not at the VINCI is the famous person, and obviously continues to today. But I love this idea of being vulnerable enough to demonstrate care, within your relationship, and also within your collaboration and your partnership. And it's sort of pushing against what we've been conditioned to the way we've been conditioned to work in terms of being willfully independent, needing to do things at a rate that isn't really it's not feasible for a lot of people. How, like, you've written so much about this idea of care within your relationship. And it's also shown in a lot of your artworks, how does it show up? Like, what are some examples of how it shows up in your relationship with Oscar

Charlie Fitz: 32:01

In everyday life? Yeah, in everyday life. So in terms of in terms of it being interdependent, so just both of us like we, I mean, luckily, we get on extremely well. So we're together most of the time, I don't know what medicine I take, and I don't know when I take it, but I always take it because Oscar hands it to me. And I trust that he's giving me the right thing. And I know that I'm extremely privileged, because I guess and this is there are people who are who are dependent on on their partners, and it isn't like this. And because of the system that we live in, in the UK, you know, it leads to really bad things. So I don't think that we should have to be dependent on one another, I think that there should be systems in place where we can be independent. Sorry, that's just my my sidenote, but in my really privileged position in which I have someone who I totally trust, and and, and he totally trusts me, he, he will do my medicine, he will bathe me your dress me he will do all these things, and I will draft his emails, or he'll ask if he's coming coming across rude or things that he can't gauge in social situations, I'll do those things. Nothing, no, you're not, it's like, you know, and I'll, I'll sometimes if he has an interview coming up, he'll ask me to like he'll like get like a script written down. Because that kind of scenario, like talking like this would be really, really stressful for him. And he would need a mask, which is like a kind of way of coping with certain situations for someone with autism. So there's like, I used to view it as He was caring for me. But I'm starting to realize that we do care for each other. And that's why it works so well. Because maybe if I was with someone who didn't, who looked down upon care, they would see me as a burden as much of society would so as people look at us and see him as the one caring for me, but because he has such a good understanding of this, because we both are so into learning about this and and really like fighting against our own internalized ableism. And what we're taught by society, it just kind of works

Nora Logan: 34:02

That's beautiful air in just the meds alone, being handed your meds is so amazing. But it's also you know, of course, how wonderful it would be if our society was different, and we had the systems in place we needed to be cared for. But also I think it's so wonderful to be in a relationship with someone, whether that's, you know, happens to be romantic for you. And it's a life partnership, whether it's that or it's a friendship or a family familial relationship to challenge our own internalized ableism and care for one another in a way that maybe doesn't look the way it's portrayed. And then the culture, right or the way that we were told was supposed to be independent and not need anyone. Well, when you have an illness and a chronic illness, or you have neuro divergence You can you can thrive in a way that's so much better than if you didn't have I mean, what would you do? If you didn't have that? It's, it's really humbling to witness the care to be recipient of the care.

Charlie Fitz: 35:12

And this is the discussion that we have some times like what would you know, what would I do if something happened to ask you suddenly, and because I've developed a lot of friendships with people with similar kind of interests, and I've said, I would probably start like a group living situation in which I would invite all my other kind of single, chronically ill friends or disabled friends who have a similar way of looking at the world into a group kind of living situation in which we could we could get cleaners and we could, you know, we could share each other's care, even though we're all sick. And that's exactly what Johanna had was sick woman theory, the first iteration of it talks about and, and then that piece isn't just talking about sick people, it's talking about any kind of marginalized individual, the sick woman is this archetype for any marginalized individual. So and I think this is why I talk about my work as, as like a cultural activism, a lot of a lot of people I know who make art and a second disabled get frustrated when they're called activists, because they're like, I'm only being called an activist, because I'm disabled, or because I'm marginalized in some respect, and because my voice isn't normally heard, and I have the utmost respect for that kind of viewpoint. But with my work, I do see it as a kind of cultural activism, because the aim is to change how people view certain situations and people, it's to challenge the stereotypes they're in built into us, is to challenge the ideas that have come down throughout history, you know, something we were talking about, earlier, we were saying about your to, like attractive to be to be ill, that comes from it's really Victorian idea of like they, they had they had phonology was like this really, really racist study of the brain, you know, this idea that you could look at someone and tell if they were a criminal, or if they were ill, or if they were evil, or if you know, these were genuine studies. And these things are still there's like a trickle down fragments of them in our society. And we just presume because it's 2022, that we're all you know, these enlightened beings. That's definitely not the case. You know? Yeah, well, I want to read something you wrote about a series of collages that you made this year in 2022, you write I created statements of self, to represent my experience of illness and disability, they are often reactions to a negative stereotype or reductive representation about illness and disability that I have encountered, I encounter these and pop culture, the media, medical culture, history of medicine, are from the people in my life, they often don't come from a malicious place, but rather a lack of education of the nuanced experiences of illness and disability to which I can only speak on my own experience and use my platform to signpost or to highlight the experiences of others where I can, my statements of self aim to counteract the the effect these reductive tropes have had on my fragmented sense of self. So in one of them, and one of the collages you write be well, and another, it has the words, I am sick, I will never get better. And it plays into what we were just talking about. This strong commentary on how a dominant culture encourages people to be well to, quote unquote, be well. And I'm curious for you, what healing looks like as a disabled person, and what does being well mean to you? And, you know, does does it sort of differ from what, what your thought process was when you made that collage of like, what people are projecting on to you. So in terms of this came up again, and it's, it's really strange, because I thought that I was at a stage in my illness where most of the people in my life really understood that I was never going to be well in the way in which they view wellness like healthy, you know, non disabled, etc, which is a joke because, anyway, what does healthy even mean? What does healthy even mean? Exactly. And after my last surgery, which most people understood was just another process of taping, backup, my kind of body that's falling apart and will always be falling apart until, until it's the end. You know? Most people understood that but some people just expected me to be to just be healthy. And sometimes, those feelings are so strong, that you kind of trick yourself into thinking that you're gonna wake up and be healthy, or like there's like this tiny little piece of you, that just thinks that you're gonna wake up and be the person that you were 10 years ago or 20 years ago or whatever. And that that obviously isn't situation so much I version of wellness, because you have, I feel like I'm having like a, I'm constantly fighting between wanting to tell people how sick I am and wanting to tell people that my life is worthy and has value and not to pity me, and that I get a lot out of life. And it's these like two things that shouldn't be in opposition, but sometimes feel like they are. So not wanting everyone to be like, Oh, your life has no value, you're sick all the time. But you can be sick. And you can get a lot out of lifestyle. If, if your state of being is accepted, and concessions are made or not concessions, but you know, your access is prioritized. So if I'm allowed to rest, if I'm allowed to have a flexible schedule, if I'm allowed to have days where I physically cannot do anything except for take my meds, it doesn't mean that I guess my version of wellness is finding a point in my life where, and I don't, I don't think I'm there quite yet. Where I can do all the things I want to do in a timeframe that suits my body. And be aware that there's always going to be, there's always going to be things that come along and throw my schedule off, and throw my plan off, because it's never gonna go to the plan. That's just not what my body is what, that's just not going to happen. Yeah. And that should be okay. And accepting that, and having people around me that are accepting of that, I think that that would be wellness for me. And that would be healing for me.

Nora Logan: 41:31

Say it again, for the people on the cheap seats. That sort of brings me to, I kind of want to talk a little bit about crying in the hospital. Yeah. And this duality, I think so much of what we go through as patients it, there's so much duality, to what we're feeling in a certain moment. And it speaks to exactly what you were just talking about. This duality of feeling like you want to be worthy, and you are worthy. Not you want to be worthy, you are worthy. And also you your life has value. And also, you want people to know, and see you and see how you're feeling on a given day. And I'm curious to know, in terms of the crying in the feeling, you know, for me, so much of it has been like I feel great, massive gratitude, of course, for for the medication I take every day and the treatment I receive and the blood work I get and I feel that gratitude genuinely. But I also feel deep grief, and have done and it's gone through many iterations for you, how has the experience of feeling grief if you do feel grief, and also demonstrably showing it in terms of crying in front of medical professionals, but also just feeling your feelings? Basically?

Charlie Fitz: 43:01

Yeah, for me, it's crying in front of medical professionals has been really different in different scenarios. So previously crying in front of medical professionals has caused what I spoke about earlier of this jump to she's a difficult patient, or She's exaggerating, or she's hysterical. She's an invoking this idea of that like hysteric woman, right. And part of this is because in my I think is because on my medical history, there are traumatic things that have happened to me that I think point them in that direction more easily than they would everyone and that that might not be the case, it might just be because I'm a woman, and I'm a white woman. So I'm in a more privileged position now a lot of people but still, that goes there. But then more recently, when I've cried, I, in my most recent hospitalization, I had nearly a life threatening reaction to a medication I'd never taken before. And I, one of the symptoms was psychosis. And it's happened, they've seen it happen to one other person, these particular medical professionals it's in it's happened to one other person before it was in Barcelona with my, with my medical professionals who know me really well. And the fact that I was crying and the fact that I was so and I said to them, I think I'm gonna die. They took it really seriously. Which I'd never had before. When I, when I've said to people in the past medical professionals, I feel as though I'm going to die, that's when it's kind of switched the other way and they've been like, okay, something fishy is going on here. Not okay, this patient is is panicking. Maybe there's a signal somewhere in her body that's telling her to panic, because something really serious has gone wrong. Right. Was there studies on that? It On the idea of panic, or the idea of as being like, as being like a symptom of like a heart attack or a symptom of a pulmonary embolism, or something right, I feel like I have not answered your question. And they've just gone on.

Nora Logan: 45:12

No, this is exactly this is exactly what I want us to talk about is sort of like just when we show emotion, I think in a medical setting, it can often be taken the wrong way, I think to say the wrong ways is not the right verbiage, even it's just taken in a way that's not necessarily in tandem with what's actually happening. And the overreaction that I've received has, has really surprised me at times, when, and that's why I sort of tied in this idea of grief and gratitude to because when you're faced with a serious illness, and when you live with a chronic condition, and you're in and out of hospital, repeatedly over time, there is trauma there. So of course it's going to come out. And it's normal that it comes out, it's I don't really understand. And that's why I want to have these conversations, why it has to be something that is taken in such a serious way. Rather than meeting the person where they are, if that's in a crying fit. Why is that met with? Oh, this person is hysterical. Because it's a natural human emotion to it's not an emotion to cry, although I've tried to make it one. But you know, it's a natural reaction to cry. Yeah. And it's a release, it's a release, and it actually has a soothing effect on our nervous system as well. Physiologically. Yeah. So you, you definitely answered my question. And then some, it's, it's, it's more to kind of think about how we can shift perception around around the grief that we feel as patients. And because you mentioned, saying, you know, I want to die. I'm curious whether you've have a relationship to your own death, and whether you've sort of become intimate with it. If you think about it.

Charlie Fitz: 47:19

Yeah, I have actually, my, my, in prior to probably my first like, my first really serious hospitalization was for a pulmonary embolism. And that was a life threatening condition. And that wasn't believed on several occasions of going in. And I think that my relationship to my own death wasn't at that point, I hadn't really ever thought about it, it was in my kind of mid, early 20s, at that point, actually. And it was just something that I hadn't really thought about. And then later, when I was, I'd always assumed that I started to get sick. And I always assumed that I was going to get better. And then later, when I was going for my fusion, I was at a point of really, either thinking, I'm gonna die from not having the surgery, or I'm gonna die during the surgery, maybe there's a tiny, tiny chance that I'm going to survive, and it's going to be okay. And that I didn't believe to be the kind of, which is what happened. Well, I'm not okay, but I'm okay. And so, one of the things and, and I really appreciate my neurosurgeon for doing this, because he never hid the fact that I could I could die in that surgery. And that was extremely serious. And he wanted me to talk to family members about it. And he wanted me to warn people. And so one of the things I did was I prepared to die. And so I me and my husband, we got married, because we knew that he might, Oscar Binta, we got married, because we knew that he would have more rights over me medically, and that I wanted him to have and that he would also he would have more help in the UK if I died if his wife had died than if a long term partner had died. So we got married, and I learned about all the things that my family would have to do. If I died and I created a folder like he literally prepared with stationery, you know, I create a folder of who they would need to call how they would extradite my body or where they could make me in Barcelona, like I prepared for it. And I mentally prepared for it. I was not scared going into that surgery. And that sounds like it should be a lie. But it's just not. I know, it was totally out of my hands. And I was totally prepared for whatever outcome and I felt kind of at peace. And then I survived. And I hadn't prepared for that bit. And I was really shocked at what came next which was survivor's guilt, which was really which was all the stress of life or the responsibility or the planning for the future or that going back to the UK and not having medical care or were these stresses It's which when I was going into that surgery, we're just not there just came back on top of me. And I thought that if that surgery was successful, I would I guess I hadn't even thought about it. Most people would think that surgery is successful, she's gonna be a lot happier. And everyone expected me to be I had really bad depression at like month three, like suicidal, horrific, horrific depression for a long time. It's one of the reasons that we got my dog, which is to two years later after my surgery, because I, I had felt a piece that I had never been able to feel before. There's a writer who talks about preparing for death as kind of the closest you can get to experiencing there was he No one can kind of really experience death. I know there are people who die and come back to life, but the idea of experiencing death, if you if you're, if you live on words, it's not really a thing, I think the closest that you can come to it is like fully preparing for it right. And so then to not die is a really unusual experience.

Nora Logan: 51:03

And one that you don't have any expectations about really, because you're so busy preparing for your death,

Charlie Fitz: 51:12

and preparing everyone around you.

Nora Logan: 51:14

So when you came back, and you were grappling with that, was there feelings of the feelings that you describe of having suicidal thoughts? Was it linked specifically to this experience of preparing for your own death? Or was it more because you were experiencing depression?

Charlie Fitz: 51:36

I think it was depression. And I think that, I don't know what I don't know what the experience would have been like If COVID hadn't happened, because three months or three months after we got back to the UK, and not even I can't remember exactly COVID happened. So I'd given been given this like I wasn't well, but I'd I'd started going out to work again, being from in the position of being in a bed, being as ill as I was, and then working, being disabled in the world. But working at a gallery, and then sort of a month or I think a month into the job, everything shut down. I was a top shielder, I was back in a room again, stuck in a room again. So I think there was so many things going on here. One was I hadn't planned for what next if I survived? And there was survivor's guilt, because I had people contacting me constantly, I would have three women a day, occasionally men, but generally women, I'm also experiencing there, what can I do? Can you help me? Can you answer my questions, and I wanted to help them, but at the same time, one person, can you help me fundraise? You know, like 10s of people if not, like, I can't even quantify because I've, at times, I've just had to be like, I'm really sorry, I have to just focus on myself. feeling guilt about that. feeling guilt that all these people had put money and invested in my well being and I and I wasn't super happy all the time, or thriving, feeling angry that I've been given more capacity. And now I've stuck it in a room again. And that also being a really triggering experience, because it was the same room. It was a room and a family home. And at one point, I was literally shielding from the other people in that house because they were they were going to school and work at one point. So I was in a room a lot of the time. And that was just kind of like PTSD experience of being back in that room. So I think there are so many things going on as to why I was feeling and still. And another thing I was I was put on. I was given medically induced menopause by a doctor by a gynecologist for my endometriosis, which is another condition I have. And I've been told since that that was one of the biggest mistakes that they could have done because my hormones were really at Rice, I think there was like multiple layers of things going on, that contributed to that feeling and the feeling that comes back a feeling that does come back. But luckily now it's kind of not as constant as intense as it was.

Nora Logan: 54:13

Yeah. I really appreciate you talking about it so openly. And frankly, because I think it's quite common actually, for people to have really serious medical interventions or surgeries, and then to experience feelings of suicide of wanting to commit suicide, and I want to dispel the myth that you're alone in it or that it's somehow outsized, it's an outsized feeling, when actually, when you look at the chain of events that can happen in someone's life, the reaction to it. And the feelings of survival of survivor's guilt and the feelings of especially in lockdown being stuck in a room. I was also a top shield that I had had similar trauma, trauma come back up feeling like it's too much to continue is, to me, not as strange as some people may or I don't know if strange definitely isn't the right word. But the reaction that I've received from other people, when I've been open about my own suicidal ideation has not really been useful. Because when you go through something so serious, and especially when you don't know if you're gonna stay or go, to then have to be faced with the reality of living right now. It can be a lot to face. And so for the feelings to come up and to, to manage them in any way you can I love that you got a dog is brave, and then to be open about it is also brave, because I think we don't, we don't always have the language to talk about these things in a way that feel safe.

Charlie Fitz: 56:07

And people find it shocking. You haven't experienced it, but it shouldn't be I mean, not. Because if you've experienced those things, and you know that you also might experience them again. And it might be an experience that you keep having throughout your life. It's no wonder that it's going to be so difficult for you like to, to kind of think, do I have the energy for that,

Nora Logan: 56:33

for your system to hold, to even just get through the day? And how great to also recognize that there's joyful things and how great like to go back to what you were talking about before of like, this sense of worth that you have, and there's so many things you want to do and the art that you make. But also, going back to the duality of things, it's just natural that we're going to have moments continuously when we don't feel good about being alive. And that's okay. It doesn't for me at least, and I can only speak for myself, it doesn't mean that I don't want to be alive. Yeah, you know, I don't want to continue making things and being in the world and having connections with people. So I just, I appreciate bringing this in. Because it's so complicated. And yet, we need to talk to each other about

Charlie Fitz: 57:35

it. Yeah. And I haven't seen anywhere, particularly that, and I'm sure there's there is but I haven't seen anywhere that's particularly talking about or anyone that is, as of yet I'm sure maybe after this, I will. Yeah. But yeah, and with my next with my surgery, after that came the realization that I'm probably going to be having these type of surgeries for the rest of my life. And that's how that's what's going to keep me alive. So it's this really unusual. I'm going to have to keep fighting really hard to stay alive. Do I have the energy for that? That and finding the energy and finding and sometimes just saying I don't have the energy, but Oscar, do you have the energy for that today? So yeah, I've got the energy for that. I'm gonna take it on,

Nora Logan: 58:25

and asking someone else to hold it for you. Yeah, yeah.

Charlie Fitz: 58:28

Witnessing each other's trauma, which is what Johanna had for sick woman theory talks about Yeah, witnessing it, holding it, you know, with with kind of consent and warning. Yeah, I'm being with

Nora Logan: 58:39

it. Yeah. So I want to shift and talk a little bit about pleasure, which is sort of a 180 from talking about death. But it's something you explore quite a bit in your work, this idea of reclaiming pleasure for yourself. And it's something I've really struggled with myself to allow in and have had to really work out and continue to. Would you read an excerpt from an article you wrote about reclaiming your own pleasure?

Charlie Fitz: 59:05

Yeah, sure. So it says the social model for disability views society's lack of access as a thing that disables a person rather than the person's impairment. This model isn't perfect, yet it's helped me to not just know but also believe that I'm not the problem. My body is functions, even its dysfunctions are not shameful. A culture that perpetuates those feelings of shame is we do not need to change our bodies we need to change our culture. The processes of claiming pride and my identity as a disabled person, and reclaiming pleasure have had a symbiotic relationship. As a sick and disabled person. I have encountered many barriers to sexual pleasure, pain, fatigue, for injury, lack of privacy, because of a reliance on family and feeling as though I'm no longer attractive because of my illness. I have like many in the disabled community experienced infantilizing assumption shins that because we are disabled, we do not have sexual desire. Well, I and many of us do have sexual desire, just as many non disabled people do. Reclaiming and making space for my desire has become more important to me since becoming disabled. In part, this is because it has become a radical act to simply talk openly about sex as a disabled person. But more importantly, with a life where daily pain is guaranteed, how can I deny myself the relief of pleasure?

Nora Logan: 1:00:28

I love that so much. And it's really the idea that it's a radical act to talk about your own pleasure as a disabled person is. So it spoke so deep to me on such a deep level, because for such a long time, I felt like I had been desexualized. And I'm curious to know for you right now, what does your pleasure practice look like? Like not even necessarily in terms of sex, but also just reclaiming that pleasure for yourself?

Charlie Fitz: 1:01:00

So I think, in some ways, it's really strange, because I think that in some ways, my illnesses has, has, it's changed. I'm in a clique of committed kind of, what's the word where you only have sex with one person monogamous, monogamous, and there we go, monogamous relationship, I'm in like, a monogamous relationship. And in some ways, my illness has made my ability to talk about pleasure and to talk about because as a as a disabled person, if I'm going into a situation, it can be self pleasure, it doesn't have to be with someone else. But where how we do things has to be spoken about, we have to get consent, and we have to get in a position, that's not going to be painful. And we have to talk about what's going to work on any given day, we have to have these conversations that I wasn't having with with sexual partners prior to being ill. Because with myself, because it wasn't seen as like sexy or cool or but because we're having to think about so many more things in terms of protecting our body. Because the public has my the fragility of my body is a bit more obvious than someone else's, it means that we're also talking about the good, what feels good, as well as what not to do, because that can be dangerous. So it comes in part because I'm with someone I feel a lot more comfortable to do that with. And, and it's not just like you said, it's not just in terms of sex, like it's also in terms of other types of the types of pleasure, like allowing yourself things that you make, or like Guilty Pleasures or something in it saying, Okay, today, I can't get out of bed. So I'm going to watch the show that makes me feel really good all day, and I'm not gonna feel crap about it. Or, like, it doesn't just have to be sexual pleasure. But I think that a lot of the shame that I carried about my sexuality prior to being sick, and about my body and about its functions have kind of had to drop away because of what it's like to be in the medical system in which your body is just, like, observed and seen by so many people, I've had to become really comfortable with my own body. And within that process, it's allowed me to just just have more frank and open communication when it comes to pleasure, and to and to not feel embarrassed about planning for it. Planning a safe, a safe, comfortable position where you can, not having to be spurred the moment and this idea that, that asking to kiss someone is not it's not sexy somehow. Right?

Nora Logan: 1:03:45

Yeah. And how empowering to have those conversations, yeah, to experience more pleasure, because really, it's just conditioning that tells us it has to be spur of the moment. But to prepare for your own pleasures, it actually could maximize it in a way

Charlie Fitz: 1:04:05

100% is really exciting. And like thinking about sex toys that are like AIDS, right? So that can help you. So all these different, all these different things that they have now, that can so if me and my partner go on to shop, or online, looking at a shop that has different devices that can help us experience pleasure, and know that my wrist isn't just going to dislocate. Because all I have to do is press a button. And that can be something exciting. You know, I mean, these things add to the excitement, or we're going to use this on that day when we know that, you know, my mom has the dog or something like this, like Yeah, and also, I've had to get to a position where and I'm not like it with everyone in my family where I've had to also say to my family because I'm still living with my parents. I'm an adult relationship in which we want to have sex sometimes, and we need the space to do that. So we were even talking about my pleasure with people outside of the relationship in order to, like, facilitate it.

Nora Logan: 1:05:07

But also how amazing it you know, the amount of people who talk about that with their parents are slim to none, right? Like, I don't want to massively generalize. But how also how empowering to be thatfrank, because pleasure should really be available to everyone. And that you've sort of been pushed into having these conversations. Maybe it feels uncomfortable, but at first, but then you, you just have them right and it becomes becomes normal.

Charlie Fitz: 1:05:38

With my mum, it's over felt uncomfortable, because that's just how she is but with Yeah, with other people it's become, it's becoming just more of a normal thing. In the same way that I have to talk about my bowels, I have to tell people, now I can't come at that time, because it takes me this long in the morning, to make sure my bowels are empty, and I can't leave the house until they're empty, because then they're going to empty themselves at any point on the journey. And that's not going to be okay for me. Right. Yeah. I mean, so being in a position where I can talk about that.

Nora Logan: 1:06:05

I love how you talk about you have the language, sort of second hand with Oscar, your husband, for when you need to go to the toilet, and he knows, because you've had conversations previously about it. And it's an ongoing thing between you. It's just sort of a secondhand thing that you can rely on.

Charlie Fitz: 1:06:24

We used to have code words, but now we just say, yeah, we've got past the code words. Now. Now we're just like, I need to find a toilet now. And, and he knows what to do. And I think I've learned a lot. I've learned a lot about communication from him as well, because he, because he has autism. And because he takes a lot of things at face value. I can't be passive aggressive with him. If I say everything's okay, even if I say yeah, everything's okay. Everything's okay. I've learned that I have to communicate my needs exactly as they are. And for the most part, if I say, This is what I need. Now, if he's able to get me there, he will, the way in which I need to communicate with him to be understood, has taught me so much. So much about communication generally. Yeah, like I've really benefited from learning to just communicate my needs, and not expecting someone to be able to read my mind. As well as we've spent so much time together that we can interpret for one another, we can be in a room and he will just say drink some water now. Because, you know, he says that I'm dehydrated. Before I do or say there's so many different things going on, I think but

Nora Logan: 1:07:35

so much care. It's really humbling to learn about and witness. So I want to ask you three questions to close. If you lived in a world that completely catered to your disability, what would that look like?

Charlie Fitz: 1:07:49

I've thought about this one a lot. Because I was getting frustrated. Because I saw an event that advertised itself as accessible to all which is just not we haven't got there yet. There is no event which is accessible to all right? And my what would it be accessible to me wouldn't necessarily be accessible to other people. So this is going to be really selfish as it should be, for me. For me, it would be having having medical professionals that view me as a human, and having medical professionals who knew about my illness really, really well having comfortable seating in every room indoors and outdoors, having comfortable benches along the street, having pay that sustained a good standard of living for two days work a week, having a society that people's pleasure, and happiness no matter what situation they're in, no matter how much they earn, no matter how well they are as a priority, no matter how they identify in any kind of characteristic identity characteristic. And also it would mean lots of really like, like, more practical things like everything would be at eye level because I can't bend over. So all the cash points would be exactly at my height. But yeah, just just just an understanding and communication and, and less pressure to be producing constantly. And not to take time for rest.

Nora Logan: 1:09:27

Yeah,

Charlie Fitz: 1:09:28

I think cushions everywhere. cushions and just a piano cushion drum.

Nora Logan: 1:09:33

What's one thing you do to keep yourself creative each day,

Charlie Fitz: 1:09:37

there will always be a bit of creativity. So if I'm if I don't have any time in a given day to to write or make artwork, then my creativity will come out in the clothes that I choose for the day or in how I choose to do my makeup. If I don't have the energy to get dressed or go out. I will write put BIM is on my phone, or I'll be making collages on my laptop. So on my iPad in bed, I don't do one thing. But there's just always an element of like innovation, innovation and creation. And I think that disabled and sick people are just innovators, because we're constantly having to go. We're constantly having to rejigger that whole way of being in the world to fit around this new symptom or this new illness. So we are just kind of, we have to be creative, right? Yeah.

Nora Logan: 1:10:27

Yeah. And fit into a world that isn't really made for Yeah. And then what's one phrase of saying that you always come back to,

Charlie Fitz: 1:10:34

it's kind of an obvious one. But it has saved my life on many occasions, and it is the trust your gut. My mom has said this to me many times. And, and it's not always going to fit for everyone. But when there's been something seriously wrong, in a relationship, in a, in a medical situation, in a living situation, and there's been this feeling at the back of my head or in my stomach, that's telling me, you need to get out of this situation. It's like, listen to that feeling. Because I do believe there's, there's way more going on with our bodies. There's way more communication happening. And we're taught not to listen to it. Yeah, so trust your gut. Because whenever I've been in an actual life, and I'm not saying that this always happens, because maybe it doesn't. But so far, whenever I've been in a life threatening situation, my body has been telling me, my body said you need to, you need to make them listen.

Nora Logan: 1:11:32

Yeah. I love that. I need that I need to have that emblazoned on my forehead. If I haven't listened to my intuition, and trusted my gut, it's standing actually, because most of the time or intuition and I got is, is the thing. That's the right thing to listen to. But I really respect you for tapping into that, rather than tapping into the conditioning.

Charlie Fitz: 1:12:02

Thank you. I mean, I was quite a bossy child. So maybe that's probably where it comes from.

Nora Logan: 1:12:07

Yeah. Well, thank you so much for being here today, Charlie. Hopefully, it's the first of many conversations like this. That was our show So, Life Wants You Dead, thank you so much for listening. You can engage with Charlie Fritz's work on her instagram @charliejfitz, where she writes and makes art about disability practices disabled joy as an act of resistance, and post photos of her really cute dog. You can find more information about her in our show notes. This episode was made in collaboration with and support from Soho House. Many thanks to Jamila Brown, Min Shrimpton, Olivia Garrity, Sagal Mohammed, Erica Bonet and Teo van den Broeke. Our editing is by the amazing Olive Olin, our illustrations by the extremely talented Ronae Fagan. And if you like what you hear, please subscribe. Leave us a review or rate us on Apple podcasts, Spotify, or wherever you get your podcasts. We'd love it if you did. rating us and subscribing really makes a difference. You can find us on Instagram @solifewantsyoudead where we talk about what's coming up, and how we most likely need a nap. Thanks so much and see you next time.