The Black Cancer Podcast
Episode 6: She Wasn’t By Herself (with Erin Douglas)
Transcribed by: Kisa Nishimoto, Eryn Strong, Elizabeth Jarvie, Hannah Rosentreter and Gina Marioni
Running time: 81:34
Erin: I think I was terrified that I didn’t want to hear really what was going on. *chuckle* [Jodi-Ann: Yeah.] You know, like, I didn’t want to hear what stage, I didn’t want to hear any of that. And I think…the first time I overheard something I – it like, it just terrified me. You know, I just kind of wanted to stay oblivious to some extent. So, and I – and my dad, he just looked stressed and scared, and I just remember him telling me it was really bad. And there were just different times where people would just be like, you know, “She’s – it’s really bad. You know, she has cancer all over. You know, she was on pretty intense pain meds.” And you know, I was just there to really just make sure she felt like someone was there. And she wasn’t by herself.
[Music fades in]
Jodi-Ann (as host): Welcome to Black Cancer. I’m your host Jodi-Ann Burey. In this episode, photographer Erin Douglas shares a perspective we don’t often get to hear from when it comes to cancer narratives: the caregiver. Specifically, the family member who reprioritizes their lives, so they can put the needs of their loved one first. That’s what Erin did for her mother, who’s recovering from a recent second instance of cancer. Between living at the hospital and staying by her side at home, Erin hadn’t slept in her own bed for six months.
This episode means a lot to me. More than ever, I’ve thought intentionally about my family and friends who showed up for me for thankless glamor-less work. The real work. The work we need to heal, the work we need as people of color to ensure that we have the strongest advocates literally by our sides, fighting for our health and for our lives. For all those who helped me, thank you. And I’m so grateful to Erin for sharing this story. There is one thing Erin did keep going when she was staying at the hospital: the Black Burner Project. Check out Erin’s Burning Man Photography on Instagram. Here’s my conversation with Erin.
[Music fades out]
Jodi-Ann: I do want to start by sharing something that I recently realized that’s particular to our relationship and our conversation about cancer. [Erin: Mmhmm.] You and I have known each other for many, many years. And during our last check in a few months ago, I learned for the first time that you had been supporting your mom through her cancer journey. And hoping, you know, that I was showing up and listening to that. But I was so blown away at the same time with how much your journey as a caregiver for your mom felt so similar to my own experience – Where we were able to talk about very similar things, even our coming to our respective cancer journeys with really different experiences. Or really different roles, I’ll say. [Erin: Right.]
And so, that was around the time that I was thinking about starting a project like this. And, it was specifically because of our conversation that I wanted to interview people who had any type of relationship to cancer, in any way. [Erin: Mmhmm.] And not just someone who was diagnosed because, it was our conversation that revealed to me that the cancer journey doesn’t just belong to the person who has the diagnosis. [Erin: Yeah.] That one diagnosis is actually the story for like, 10+ people. [Erin: Right.] I don’t know if I would have come to that realization without our conversation. [Erin: Really?] Yeah. And I’m afraid to say that because if this podcast ever makes any money, I feel like I owe you a percentage. *both laugh*
Erin: It’s okay, I’m sure we will have other ways of the favor being returned. I have some things in mind, so *laughs* just joking.
Jodi-Ann: Actually, [Erin: No.] now that you say that… But yeah, I least wanted to share that because I’ve been on this take of what makes this project so unique.What makes it so different? And, at least the feedback that I’m getting from people who’ve been listening to it. That’s always the hook, right? Of, “Oh my God, I’m seeing maybe the people in my life differently? And thinking about like, how did this impact them? [Erin: Right.] Or understanding your own experience differently around how other people are sharing their story.” So, I just wanted to say that and thank you for that.
Erin: I’m glad we were able to catch up when we did, but I think it’s also just this idea that me as a caretaker, I have very few opportunities to speak completely candidly and openly and with comfort, I guess. Without having to like, truly explain everything. Because there’s not as many, you just, you know, in – in your inner circle, you don’t have that many people who have been caretakers, I feel like on the normal. So, I would say thanks for being – first seeing that, and wanting to share those stories, because the caretaker role, at least from my perspective, feels like something that most people don’t understand. People who are caretakers just don’t really get the recognition, not that they were looking for recognition, but the recognition and the overall major role that someone is taking and the, the energy and the work and everything that it is, it’s I think, it’s just often overlooked.
There’s no book. There’s no, you know, I mean, maybe there is, but there’s not something that’s just a known thing out there for caretakers, you know. And normally – usually, it’s something that’s not planned, and it’s very sudden. And so, for those who have taken on that role, I just give them so much, you know, like praise and blessings. And just kudos, because it’s-it’s a, it’s major.
Jodi-Ann: It’s intentionally an invisible position, in some ways, right? [Erin: Mmhmm. Totally.] Because the person who’s experiencing the health crisis, and in this case, battling cancer, every-everyone is there because of this person’s condition. [Erin: Mmhmm.] And so, even you as the person who’s helping, you’re just there to like, help that person to help their mom. And so no one’s really supposed to pay attention to you. Right? [Erin: Right.] But there are people who are professional, and this is their job, this is their profession. And I still find that people who take on that role professionally, is also like this invisible, thankless position. And I mean, at least for me, having gone through this, I just look at, you know, nurses, medical assistants, caretakers. I have a lot of aunts in my family who are at-home caregivers for other people professionally, and just like – oh my god, that is such a big, critical, important role. [Erin: Mmhmm.]
People that we love the most, would not be where they are without these people. Right?
[Erin: Yeah.] Yeah. So, before we get into a bit about, you know, your mom’s diagnosis and your relationship to that, I’m wondering if you could just share a bit about kind of what your relationship was like, with your mom, before the diagnosis? And what was going on in your life at the time.
Erin: Yeah, I would say, I had moved back home to live with my family, to just get some clarity to kind of figure out some things in regards to what I want to do. Having lived in New York for 15 years, I hadn’t planned on being here for, for as long as I was or am. And, I would say me and my mom have a…always wish it was closer kind of relationship for me. And there were just some things that were always holding me back from it. I know it just has to do with her journey and her experience with her mom, which was not – it was just kind of estranged. And some other, you know, traumatic things that we’ve had to go through with losing people and how that impacted her and us. But, I would say that we, you know, there was a lot of- there’s a lot of similarities. She’s a creative, she’s a teacher. Everyone loves my mom, she’s a great cook.
But there was always this yearning for some type of deeper connection that I was unable to really be able to figure out how to come, how to come from it from my side, just because I hadn’t learned it. And I – you know, they live in the suburbs, it was kind of hard to adjust moving back home to a place where I grew up and felt like a lot of people I was interacting with, I would say kind of couldn’t relate to. A lot of you have stayed here and, you know, so it was hard to find community out here. So it was kind of that was where I was but I was building my business as a photographer and I actually had just committed to spearheading my photography career and doing it full-time that year. So that was, what was it 2019 or the end of 2018? I was picking up on jobs and events and clients and, and things like that. And so she basically had two different cancer scenarios. And – but the one we’re going to more specifically speak about is the last one.
Jodi-Ann: Yeah. Your photography, I will say, is just outstanding. Your eye, your vision and your work is just so clear. And it’s so good. [Erin: Thank you.] And honestly, if anyone, if anyone out there, Lord Jesus, wants to marry me, please, I will hire you, girl. *both laugh*
Erin: Oh, Someone does, someone does. I’m saying the same thing. You know? *both laugh* [Jodi-Ann: Yeah]
Jodi-Ann: *both laugh* Please look us up and just – you know, hit us up. Hit us up in the inbox.*both laugh*
Erin: I don’t mind one of those. *laughs* Yeah. [Jodi-Ann: That’s hilarious.]
Jodi-Ann: So how did you hear about your mom’s diagnosis?
Erin: So originally, she was diagnosed, and she went through a round of chemo. And she, you know, was successful in the sense that they were like, “Oh”, I’m pretty sure they were, like, “Cancer free, everything’s good”. So that was 2018. And she was still able to work, do her reg-do everything that she normally was. She was still having chemo, going to work. So, other than taking her to her chemo sessions, there wasn’t much more required of me the first time. And then she started to get this pain in her leg that just intensified. And I remember coming back from Burning Man, and then I had a conference in Memphis and assumed that her pain was gone, and learned that she was still in excruciating pain. And she had a doctor’s appointment, which then led her to go to the hospital instead. And basically, she didn’t come back home from there. You know, and with this pain, I kept seeing, like, you know, they kept saying it was one thing, and they kept saying this and that, and, “Oh, it’s probably from the chemo because of this.”
And what it was, was that there were little cancer cells that they didn’t pick up on and had spread and gone into her bones. And, so there was a tumor in her leg. And that was what it was giving her so much pain, but it was all over the place. Because the pain was so excruciating, they, um, they kept her. And we were in the hospital for a month. She – we were there for a month straight. She didn’t see the outside. I saw it, you know, every now and then. *chuckle* And, it kind of like, the role, just kind of, you know…There was really no, “This is what’s going to happen.” You know, I just started to go and stay in the hospital with her.
Jodi-Ann: So were you there when you – did you take her to the hospital where she…
Erin: No, my dad did.
Jodi-Ann: So did he call you and tell you? Like, how did that go down?
Erin: Since they were just going to go to the doctor’s, I wasn’t going. My mom – and my dad was with her going to the doctor’s. But yeah, that was it. So he called and just said, “We’re going to the hospital instead.” And I kind of just waited for a night. You know, there was some time I think in the emergency rooms, I just kind of waited for an update. And then – and then I just went in there I think. And we didn’t – we had no clue what was really going to happen. But she was just in a lot of, a lot of pain. [Jodi-Ann: Yeah.] So eventually, they admitted her and we had no clue what – what the future held for us, for months, you know, months ahead of time. Yeah.
Jodi-Ann: So when did it sink in for you that, Crap, my mom’s going through cancer again. And maybe this time, it’s more serious than the last time?
Erin: Honestly, I think I was terrified that I didn’t want to hear really what was going on. *chuckle* [Jodi-Ann: Yeah.] You know, like, I didn’t want to hear what stage, I didn’t want to hear any of that. And I think the first time I overheard something I – like, it just terrified me, you know. I just kind of wanted to stay oblivious to some extent. So – and I, and my dad, he just looked stressed and scared. And I just remember him telling me it was really bad at one point. And, you know, they do the rounds. And they, they talk about the situation. And some of them go a little bit deeper and some say things and I was just like I couldn’t handle hearing them say like all the all the things that were going on.
And there were just different times where people would just be like, you know, “She’s – it’s really bad.” You know, “She has cancer all over” you know, all this different stuff. And, you know, she was on pretty intense pain meds. And you know, I was just there to really just make sure she felt like someone was there. [Jodi-Ann: Yeah.] And she wasn’t by herself. You know, and especially after it was, you know, a week, it’s like, Okay, I don’t know how long this is going to be. But you know, just seeing her in pain, it was so painful. You know that it was just she couldn’t even stay still almost, it was so painful. It was hard to see her like that. But I also didn’t want her to be by herself in that, within, you know, having to deal with the pain.
Jodi-Ann: Yeah. I think that’s, that’s an element of being hospitalized I think a lot of people don’t understand. That you’re in a hospital that is filled with hundreds or thousands of people, your doctors, like you’re saying, they do rounds. They just get them for a moment. But there’s still a lot of, I don’t want to say downtime, because if you’re in the hospital, you’re not like hanging out. Right? *chuckle*
But you don’t have someone who’s just with you all the time. [Erin: Right.] And there are times when you’re sleeping, wake up, you’re in pain, and there could be no one there. You know, someone who has been in the hospital and had someone also who was just always there, it’s such a relief. [Erin: Mmhmm.] Because you don’t really get to see people that you know. [Erin: Right.] Even everyday, your nurses are different. You’re always meeting new people. And so I don’t think people get that.
Erin: No, I mean, besides becoming their advocate, because you’re, you are learning everything. And not, are, not only are you learning what the nurses and the doctors are saying, but because you are there, sometimes I didn’t go home or leave 24 hours. You’re learning everything about your, you know, whoever it is, you’re taking care of your, you know, my mom, in this instance. I knew how she should be turned, I knew what was going to hurt. I knew when something was off with her pain meds, you know, I knew that something wasn’t right here. And I was giving them my perspective on what I thought was going on. *chuckles* So many instances that happened, you know, I wasn’t a professional, but having watched her and knowing different things, and just you kind of like problem solving in your head. And in so many different roles you take on on top of it as like in terms of skills and figuring things out that, you know, you become so much more than someone who’s able to help them to the bathroom, when a nurse can’t get in there, you know? [Jodi-Ann: Mhmm] You’re able to tell them something’s not right, especially when there’s been a shift change and the new nurse may have a completely different perspective of what she is capable of doing or what she should do. You know, I’ve had – I had a nurse who told me “Oh, no, she can’t walk”. And I’m like, “Yes, she can”. *chuckles* Um, why? How are you going to tell me what she can do? Yes, she can. But if I wasn’t there, you know, she would have been, she would have sat and she wouldn’t have taken that first step to, you know, strengthen her legs. And, you know, that was a different nurse. And, but another nurse might have said something else or, you know, so it’s-it’s so many roles in one, you know. And that doesn’t account for all those things that you’re doing plus, not sleeping. *chuckles*
Jodi-Ann: I mean, can you recount a particular instance where, upon looking at it now, you’re just like, Damn, I’m glad I was there.
Erin: Oh, my goodness. I mean, soooo many *laughs*. So many, because I-I do know that if it wasn’t for me, she lost her mobility because she had been in the, in the bed for so long and not able to walk because of the pain. Her legs got so weak that she just couldn’t. She couldn’t do anything. So she needed help to get on the commode. She you know, she couldn’t walk to the bathroom. So we needed a bedside commode. I, you know, was doing makeshift things with – with the pads, so that I can wrap it so it didn’t hurt her legs. And I was teaching them how to wrap it and make it more comfortable for her.
And, you know, so I was like, you know, there were so many instances where she would have had to wait for who knows [Jodi-Ann: Mhmm] how long to go to the bathroom. Or to get off of the commode, something that was causing her additional pain because it was pressure on her leg which was in pain. Or, you know, moments where I realized somebody skipped us and didn’t bring us anything to eat. And, um, or her needing her-her sheets changed because she couldn’t go up and sometimes she lost some ability to like know she needed to go to the bathroom. I was even turning her over myself sometimes and then I would consistently get certain nurses that would say, you know, in terms of liability, you aren’t able to do this and this and that.
Understandable. But I wouldn’t need to, if someone was here, if it’s going to take you 45 minutes to come here to help her to the bathroom, which then means that maybe she went to the bathroom, which is going to take you another 40 minutes to come back and get all the stuff to change her. I’m going to do it. And if you don’t want me to, then you need to get here *laughs*. [Jodi-Ann: Yeah] Like, I have no problem not doing this, I really don’t. It’s hard to lift a full grown person, no matter how much weight she lost *chuckles*, it was still like, so, you know, I think there were just so many instances that I was there to like advocate or to say like, something isn’t right. Could it possibly be this? Or, you know, just so everyday, [Jodi-Ann: Yeah], you know, so…
Jodi-Ann: Yeah, I mean, even just listening to you recount the types of things that’s what makes caregiving and being hospitalized unsexy and hard to talk about, because it’s already about the things that we don’t like talking about. [Erin: Mhmm] Like getting to the bathroom, you know, turning her and just taking care of our bodily needs. I think, for people who have been hospitalized, just think, particularly as you’re taking in a lot of fluids, and you’re taking a lot of medication, which makes it hard to poop and all that kind of stuff. Just think of like, every single time you have to get up and go to the bathroom becomes a three person operation.
Erin: Oh, yeah [Jodi-Ann chuckles]. I mean, the things that you do, you know, you know, not only is in-in at least in my situation, you know, trying to get her to go to bed, her to go to the bathroom, putting on medic, like go to the poop, meditation, music, *chuckles* and like to move your bowels like bowel meditation, and like drip I, you know, I would drip water, I would put water in the basin, and I would get a washcloth and just like, let the water drip and squeeze the water to make her like have to go to the bathroom like, Oh, do you understand? And this would be 2:30-3am in the morning? [Jodi-Ann: Oh yeah]. Ugh. So many things, you know, and then you know, when it comes to constipation, it’s hard. And so it’s like, you have to help. And when I say all the ways, I mean, all the ways. Like, for things you don’t even think about, you’re helping a grown person, you know, you become creative. But I also know that if I wasn’t there, I really don’t know what what would’ve hap-you know, happened because I don’t think they they don’t have the time to get creative and to sit there and to massage go back and put on meditation music. And to, you know, when-when it’s coming, and it’s not going anywhere to help her and to, you know, you know, so I don’t know. I just don’t know. And then, you know, the longer you don’t move your bowels, and then that also affects other things that they can or can’t do. [Jodi-Ann: Right] Other things you can or can’t get, you can get, those things just have to happen. And they’re-they’re there to be like, okay, when’s the next when’s the last time you did this once the last time you went to the bathroom? And it’s so – and I couldn’t imagine what she was going through as someone who was independent. She also needed assistance in every area of it from someone else.
Jodi-Ann: Yeah, I can feel the meaning. I don’t know if that’s the right word. But especially as an adult, you have this, such a strong sense of independence. And when you have to rely on people, for the most intimate parts of your day, and then that person is a family member who doesn’t see you this way. Right? [Erin: Mhmm] Is now so involved in seeing every square inch of you [Erin: Yes *chuckles*], right. And I remember the first time to get naked in front of my little sister, I just felt a lot of shame [Erin: Mhmm]. And then when I got discharged, um, you know, my eldest sister had to help me into the shower every night. [Erin: Mhmm] And I cried every single night. It was just so – I just felt so I’m like, that was the sign that I had lost my independence when I couldn’t even get to the bathroom myself. But then I think at least for me, after a while, when I was in the hospital, I was just like, whatever. I would have friends come and visit while they were, you know, giving me a sponge bath. I’m like, it’s fine. I don’t care. Everyone looks at me every single day. *laughs* So I can only imagine like, if I was feeling that way, like a sister-sister scenario. What the heck did that feel like for you? This is your mother?
Erin: Mmhmm. I was just I gave her a kudos but I felt like there was that same transition where I don’t know if she was actually comfortable. But, you know, she – it seems more, like she was more comfortable at some point. Just being like, eh everybody’s everybody seen me at this point. So it was nothing, you know, even now I think, she’s making more like, wow, you know, it’s just that I’m like, man I kudos to you for, you know, I mean, I know you have no option, but just all of you, you know, and having to just let people see you and something and it’s not always, you know me, yes, it was different because I, you know, we weren’t, we’re not the family where you’re walking around and your bra and your underwear and every, you know, like, super covered all the time *chuckles*. [Jodi-Ann: Yeah] Like, we’re just not that intimate like that. But in the hospital, it’s like, even still, you know, it’s not always a female, [Jodi-Ann: Yup], you know, the male nurses that have to, you know, change you or come in, and there were instances where she might have felt a little bit uncomfortable.
And I think it was more because the nurses who happened to be male that she was she was experiencing just seemed a little less, they seemed a little bit more rough, and not able to really connect on how to go about things. And it was hard to know what, where that was coming from. And so, I think that just made her more uncomfortable. [Jodi-Ann: Yeah] And so there were definitely at least one situation, scenario where I was like, “Look, um, my mom doesn’t feel comfortable with this particular male nurse, I need you to send someone else” but it was definitely him as a nurse. And some – I don’t remember the scenario in particular, but I just remember him just kind of not getting it *chuckle* and being super rough. And always like, she always found herself saying, “ow”, you know, this and that. And so I just had to go and tell the head-head nurse, like “I need someone else.” [Jodi-Ann: I need you to shut this down]. Yeah *laughs*. Like, I’ve given him too many opportunities. He hasn’t figured it out. So, but yeah, it’s definitely I feel like, to fast for you when she got home, and had help from aunts and stuff and having to go to the bathroom in front of people. I think that’s one thing, especially to sit there and have to go to the bathroom, and, you know, far beyond peeing, you know. Like, that – I couldn’t imagine. You know, having that mindset of just letting yourself be able to do it and not feel some kind of way. But it looked at one at some point, it definitely seemed like she was, she was used to it? I have to ask her how how it actually felt.*laughs* I don’t think she’ll just go and squat in front of anybody right now, just because she got used to it, you know *laughs*.
Jodi-Ann: Yeah, almost when you start like, Oh, excuse me, you know, covering yourself up, you realize that you’re in a different mindset, like, Oh, yeah, remember those days when I would just take a shit in front of anybody? [Erin: Right *chuckles*] Yeah, I find it weird. Like my sister accidentally came into the bathroom when I was changing and I was like, Oh, my God. And I’m like, wait, *chuckles* the same sister two years ago took like, *laughs* she’s seen everything you know, like, what is that? You know?
Erin: Some serious stuff. Yeah.
Jodi-Ann: I know. I wonder, you know, the unsexy-ness of this part of it, if that is connected to what you had mentioned to me before around, which I thought was just so profound and has not left me since, when you said that “caretaking and taking care of someone are really different”. So I’m wondering if you could say a little bit more about that distinction between caretaking and taking care of somebody?
Erin: Well, I think anytime you have someone who is not, in-in regards to being a healthy person, so I’m not talking about like pregnancy, and like far beyond, you know, delivering a child and the things that-that women have to go through. That’s its own thing. But I think when the challenges of like, and I’m not a mother and neither I haven’t had a child, but the challenges of taking care of someone who is healthy, versus someone who is not healthy. And especially when they’re older, and adult size *chuckles*. There is just a difference. One mentally because the challenge isn’t a challenge that you are – that brings joy in moments, like you’re just unsure and scared every day.
Unsure and scared because there’s the potential of losing this person. Or, you know, there is the potential of things never getting better. And so, I just think that because you don’t – because there is no like moments of joy, other than maybe just like we got through the day, and there’s another day. I think that’s the difference. And then also, there’s no like, you know, my mom is a grown adult, so she could talk back. There was no, you know, lifting her up and patting on the back and putting her in ti-, you know, it’s like, I had to endure a grown person who was in pain, being hurtful. And also, you know, just, there’s so many intricacies of the, the role of a caretaker that they just don’t get better *chuckles*. You know, you just you don’t see it with light at the end of the tunnel, you know, and there’s also like, no support, there’s no, there’s no book on it, there’s nobody calling you and saying “Congratulations!” Or, you know, “Let’s have a meet up and bring all of our…” you know. There is no, there’s no support, really. Sometimes it’s too – too much to even be able to talk about. And I think it’s just this level of moredom, like being super scared. And having to pick up on something that oftentimes you have, you have no one to, to call and relate to. There’s, you know, rarely a friend that can give you advice on this. And, you know, in my, in my situation, I was every night, waking up several times a night, but also having to put 100 and something pound woman on a commode from a bed by myself. And putting her back on there and pulling her up on the bed. And, you know like, it’s just ultimately I almost I just think it has so much to do with the mental emotional side of it. And coming, you know, me coming from having take care of an adult. I think anytime you have someone who’s not healthy, that you’re taking care of just sets you so far apart from taking care of someone who’s healthy, and it’s just the challenges of navigating that.
Jodi-Ann: I think of – I think that’s a really interesting parallel of parents. [Erin: Mmhmm.] And you’re just like, Oh my god, I made a person. And yes, it’s difficult to take care of this person and the sleepless nights and, you know, the unsexy tasks of parenting an infant – especially. But, you know, I’ve had friends of mine, who are first time parents who call me and ask for advice. I mean, I’ve been an Aunt since I was 13 and so I’ve had a lot of baby exposure. [Erin: Right.] And there are just so many different types of people that you can talk to about: people in your own family, people who have kids, people who don’t have kids but have experience. Or, there’s more of a normalization for-for parents to talk about what that caretaking, you know, or taking care of [Erin: Right.] like, your child. And then maybe in the sense of responsibility, like It’s my child, I’m going – that’s my role as the parent. I take care of this child. [Erin: Right.] But in caretaking, there’s not a lot of people to talk to about it, like you say, and in a lot of instances, because you know, this is your mom, particularly at this point in-in your life, it’s not really your “responsibility”. [Erin: Mmhmm.] It’s not your role to do these things for your parents, you know, especially at this age. I think all of us have this sense of you know, One day, I’ll have to wipe my parent’s ass, [Erin: Right.] but not today. You’re like, No, it’s, it’s today. *laughs* [Erin: Yeah.]
Erin: Or – you know, and I think part of it is, there’s no planning and there’s no excitement about finding out that you have to be a caretaker, you know? You take on the role sometimes, because there’s no one else who stepped up to the plate. And even people within your, you know, close family circle, might not even be supportive, just because it’s such a traumatic, traumatic, you know, either – you find out of have something, whether, you know, someone was born into being unhealthy and they are just someone that they have to be a caretaker for from the beginning, or you were thrown into this new scenario that was tragic, you know, and traumatic. And there is no like, “light” about finding out about that you have to take care of a human differently. [Jodi-Ann: Yeah.] And, you know, it would be just regular, you know? And it’s also this idea of like, Okay, this is my mom, and we usually just have conversations and right now she can’t even, you know, walk. She’s not cognizant the same way. I have to speak for her. She’s not eating. She’s not understanding this and she’s also speaking out of pain and hurt, so she can be hurtful. And so I, it’s-it’s I yeah…it’s just so…it’s such a job…that-that *laughs* you just aren’t prepared for, you know? And you just…yeah.
Jodi-Ann: And, and it’s cancer, right? The thing that everyone is scared of getting. The thing that people spend so much time trying to avoid. [Erin: Mhmm] That’s the thing you’re trying to support this person with and so you have compassion, but sometimes they’re assholes, you know? I mean, recently I asked my sister, [Erin: Oh my gosh, yeah.] I made a comment, like, “Oh, like, in my mind, I handled it very well, you know, I remember making jokes and stuff in the hospital and like, doing all these fun games or whatever.” And my sister’s like, “You were a pain.” *both laugh* And like, from her perspective, the amount of emotional work that she has to do to say, She’s going through a lot right now. [Erin: Right.] Not showing up as her best self. [Erin: Mmhmm.] And having to kind of silently in her own thankless job – to swallow ways that I was being, uh let’s say, “unpleasant”. *laughs* [Erin: Right. *laughs*]
Erin: Yes, I-I experienced many “unpleasant” – and I had to sit back because it hurt. [Jodi-Ann: Mmhmm.] I had to, you know, have talks with myself and say, like, Don’t take it personal. But also-also allow myself to be like, Oh, my gosh, I’m doing so much and she’s hurt my feelings, like, geez. *laughs* You know? [Jodi-Ann: Yeah.] And, you know, she probably had no clue. I mean, actually, there was a time that she fought me like in the hospital.
Jodi-Ann: Like, she started swinging at you?
Jodi-Ann: Oh my god. *laughs*
Erin: And, you know, it had to do with the pain meds, and then like adjusting things and not taking into account of other – you know, like, how it would respond, how she would respond to it. And *laughs* I mean, so many things. I always tell her, like, “You remember it.” I’d be like, “You know you fought me in the hospital, right?” She’s like, “Yeah, you told me.” *laughs* And having to deal with that, you know? Like, I can’t just go and plop her in timeout, because she, you know, hit me. Like something…
Jodi-Ann: After that I’m sure you came to the hospital all greased up with some Vaseline just in case she decided to swing at you again. *laughs*
Erin: And you have all these, like, inner thoughts are just like, Oh, my gosh, I had to, you know, deal with that. And, you know, like, it’s just not a lot of knowledge – or misconception of what care taking is. And so I think some people are – you know, to them, it just might be like giving someone meds. And maybe that is for someone. But, if someone’s like, really deep in, as a caretaker, be super sensitive about what you assume that they’re doing or not doing or how hard it is because not only have they become almost parent-like in a matter of a day without having like, the, you know, “inner hormones – just like make you this super Mom” – you know? *both laugh* Like, there’s nothing that just like, you know? Like, there’s nothing. And it’s like, not only that but they are figuring it out by themselves; having to go with, you know, having to stand up and go against medical professionals. And like I said, doing things that just – that are just creative. Let’s just say that creative and…*laughs* not cute.
Jodi-Ann: Yup! So, what changed for you, in your own life after you essentially moved into the hospital?
Erin: Oh, my gosh, I, I would say the only time I went home was really to – I would try to go to the gym, but I couldn’t concentrate. So I was just like, I just want to go sit in the sauna. That was the only thing I wanted was just a little time away and something that was going to make me feel cozy or something? *laughs* I don’t know. Um, but, you know, like I mentioned, it was the first time I had solely focused on my photography career. And I had picked up on a pretty good client that I was getting, doing events for consistently. And I had, you know, a good number of things on my calendar. And everything just seemed to be canceled or dropped randomly. And then it just seemed like nobody was reaching out. So it seemed – like it which was good in a sense – because I didn’t have to say no to opportunities. But then it was also like, Oh my gosh, I was just kind of on a roll, you know. And now there’s nothing. And then obviously, that still means I’m not making any money. And I think I might have had two – almost like just two gigs that I was glad to be able to leave the hospital and go to. But I think that was the biggest thing: it was just like my social life. I didn’t have one. Until I think there was a moment where I just went crazy. I was just like, I need to go out. But you know, even then I was leaving at, like, 11:00 PM to go out and just get some, some social time.
So – no social time. I didn’t see anyone. I didn’t really talk to any of my friends. I think the only friend I spoke to was a friend who actually had been a caretaker in her life with her mom. And I eventually had to let people know like, I am not okay. And it’s really hard for me to be open and express my feelings, you know, to even some of my closest friends. I had to just say in text, like, Just let you know, I’m not okay, don’t but – I can’t – I don’t have the capacity to answer any questions. Please don’t ask me any questions. And so it was kind of like having those moments too, where I had to tell people like, “I can’t rehash what I just went through. This, this – today alone – just for you to gain nothing.” I mean, you know? Like, you’re not really going to be able to like – what are you going to do with this information? Other than have it and maybe talk about it to somebody else? I don’t know. [Jodi-Ann: Yeah.] Um, so it wasn’t important enough for me to rehash, you know, this emotional day I was going through – or week, or whatever – for someone to understand how, how traumatic it was.
And…so yeah, so I think it was just so many things: work and social life. And I really don’t know how many hours I actually got to sleep in a matter of, you know, four months, it was not a lot. And then on top of that, I didn’t sleep in a bed from October to…I don’t even know, March? Maybe, April? Like, there might have been one time I slept on my bed maybe during the day where I finally was like, I need a bed to take a nap in. But in terms of bedtime, I did not – I didn’t sleep in a bed. I don’t know if I was numb. I don’t know if I recognized how it was affecting me – really. Like I knew I was tired, but I also recognize that I’m, I’m still able to do things and do whatever I need to do in crazy, intense situations. I can function. And maybe I don’t realize it’s not 100%. But I can still function pretty well not having slept, and having to take care of someone and having to do all the things – I can function pretty well.
Jodi-Ann: You’re like a supercharged person. Like, it’s so interesting, ‘cause you’re both mentally emotionally, physically drained from this process. [Erin: Mmhmm.] And I want to circle back on this thing, right? Of not sleeping in the bed for six months – that when you have someone who’s a caretaker that’s also in the hospital with the patient – there’s no separate bed. There’s no ward in the hospital for family members who need to sleep there 24/7. You are in a chair or across a couple chairs [Erin: Yeah.] for an extended period of time. Like, as you’re drained, you’re also…I guess, finding out new-new parts of yourself in all this capacity that you have to take on so much. I mean, how has this – I mean – what do you think about yourself having, looking back? I mean, it’s not even that far back. But looking back on the hospital experience and your transition role in caretaking at home.
Erin: It’s funny ‘cause I always have had this level of like, lack of confidence, I think, and I still struggle with that now that I’m out of it. There was a moment where I stood up after having picked up my mom out the bed by myself, *laughs* and I’m like, I wasn’t even going to the gym. That was the gym.[Jodi-Ann: Yeah] And I remember saying like, I can do anything. [Jodi-Ann: Mmm.] Like I could do anything. Like I felt like Superwoman because I was like, If I can figure this out, and not only that, but be able to function and – ‘cause essentially caretaking is trying to bring somebody back to the healthiest part of them. And then, you know, even if something is inevitable or you don’t know where it’s gonna go – like in your mind, you’re doing everything you can do to hopefully make them better. You know? You’re hoping that like, when they wake up, maybe there’s something new that they can do. Or maybe there’s something – so like, you’re trying to make them healthier as a non, you know, medical professional. So, I’m like, I don’t know if I saw it like that until later…people told me that it was because of me, they said that, like, “[I] saved her”, or they said that, like, you know, “You brought her health back”. Or they just, they just said it in ways that made me be like, Oh, wow. You know? But there was a moment where I said, I can do anything. To me, I just didn’t understand how I wasn’t able to translate that over into other areas of my life that I’ve struggled with, like career or, you know, walking out there and thinking I’m the ish, *laughs* you know? [Jodi-Ann: laughs] Snatching up a beautiful man, or whatever it is. [Jodi-Ann: Yass.] *both laugh* Like, I don’t know why I haven’t been able to, and it’s still a struggle. So I have to go back to that moment a lot of times, and remind myself of what I was able to do.
Yeah. So I think that that was probably the biggest kind of epiphany in the six months of seeing myself differently.
Jodi-Ann: Yeah. When you told me about the photography that you did for the March on Washington…[Erin: Mmhmm.] …when I saw those photos, and when you told me how hot it was, and just kind of all the stuff that was going on, like, did you think back to that moment? Or, how did you think about your capacity in enduring the mental, physical and emotional strain of shooting for the March on Washington?
Erin: To circle back – so my mom went into the hospital, I believe, the end of September 2019 or October. She was there for a month. So I think in total, I was probably living in the hospital there for two months total. She went to rehab, she wound up getting an infection. And the last, her last hospital stay was in January, through the New Years, through her birthday. And so basically, we saw some progress in her at the last hospital stay. So I think a lot of it had to do with an infection that she had that they didn’t notice before. So, bringing her back – ‘cause there was the hospital stay of taking care of her – and then the home stay of taking care of her, which is super intense, things started to look better. And she started to gain some strength by the time February came. So I was just starting to get out…and then, *laughs* and just starting to, like, emerge and be like, Okay, I can go out or I can start possibly looking into work…taking some time – we had a homecare nurse – taking some time to go to the library and work. And then COVID happened. And so I basically had been quarantined since October and had to go back inside the house. *laughs*
Jodi-Ann: As soon as you’re coming out, the whole government is just like, Nah, girl, you gotta go back, you gotta go back.
Erin: It was really, really rough. And so, as a photographer, I was like, I hadn’t really shot anything, you know, for all of those months, you know, and it’s like – I was not thinking about documenting it, because I was the caretaker. And maybe if I wasn’t the caretaker of maybe there were moments I would have – you know?
So when it came to – by the time the March on Washington happened, there was one other March that I, that I went to, but it was a really hard decision. Because as a caretaker, you are making your decisions during COVID based on the person you are taking care of. And so it was really hard for me to decide whether I wanted to go out or not. But I also knew that I hadn’t been shooting, and I really felt like the need to be out there. And I felt the need to document and it was stressing me out that I couldn’t just make a simple decision. Like I had to think of somebody else. If it was just me living at home, I would have been like, Okay, like, I’ll take this risk, I’ll do that, I’ll do this. But I had to think of someone else.
And so it was, it was a tough decision. But I felt like I had to, like, there was just this deep part of me. And I think it when it comes to-to actually capturing it, maybe there is a level of detail that I was more aware of now like having been a caretaker and seeing things. And I mean as a photographer, even if you’re out there having fun and it doesn’t feel like work, you’re still mentally using, you’re using your mental capacity a lot differently than everyone else because you’re searching. And to search, and to be aware, and to look is mental energy that you’re using that you don’t even know you are.
So I think, you know, I just went out there, I had an amazing photographer – Karsten – who I was with who I look up to as kind of like, a mentor. He takes great photos, and I was able to kind of go out there and learn from him. And then also shoot from this, the side of me who hadn’t been shooting, you know, and had been seeing people taking photos of all of what was going on, and wishing, you know, like, I’ve been like, Oh, I want to be that person who’s like, in the New York Times, or Rolling Stone or Time and hasn’t happened yet. But um, I think I kind of went out there with the idea of like, practicing and knowing where I would initially like my work to end up. And kind of, you know, being in the space of like, dreaming a little bit bigger.
But it’s, you know, it’s been, it’s having fallen into this – straight into COVID it’s just been really difficult. *chuckles* So, you know, I’ve been lucky to, you know, that we’ve been healthy. But the March on Washington was super intense and draining. And I had, I have to often remind myself that I never recovered from the past six months. I never got six months worth of rest, that I lost. And so even a day of sleep is not going to catch me up with all of what I lost and the trauma that I-that I went through. And so it was great to be out there, and I’m happy with what I got. But it was really tough on me *chuckles* mentally, and it was exhausting. And being out there in that heat with a mask on with heavy, you know, heavy weight of a camera and lenses and a hat – it took me out. *laughs* So, I’m glad you like the photos because it took me out.
Jodi-Ann: I love them. I mean, I just remember scrolling on Instagram, and I saw a photo. And I mean, we’re in this moment where there are a lot of images from the marches and protests and demonstrations all over the country, all over the world. [Erin: MmHmm.] And when I was just scrolling and I saw this photo, I’m like, Erin? *both laugh*
Like holy hell, Erin is out, like, Erin is shooting. And I-you know, just knowing everything that’s been going on with your mom, I was just so excited to see you out. [Erin: MmHmm.] And also like, Oh, shit Erin’s out about in the world, like is *laughs* is everything okay?
Erin: Which is, for me, I consider myself a travel photographer, because that’s what I’m most passionate about, with telling stories of the places that I’ve been and encouraging, encouraging people through my work to hopefully explore and travel. And I haven’t been anywhere, and I’m usually someone who travels several times a year. And so, DC I think it’s the furthest I’ve been. I might have taken one trip to New York, because I had-I have a dear friend who has been in the caretaker role, who was adamant about making sure I was taking care of myself, and I was not.
And so he made me come up *laughs* and made me spend time with them. And so, I think I went to New York once, but I feel like, on the regular I would be up there visiting friends, you know, a lot more than where I’ve been. So DC is the furthest I’ve really been in a long time. *laughs* And ‘cause I, so I spent a weekend there and had a few friends come from New York. So yeah, I was out. That was out for me. You know, in comparison to our regular, normal year of traveling and exploring and, and things,so yeah.
Jodi-Ann: Yeah. It’s good that you had that support of that trip to New York and kind of being forced to take care of yourself. You know, how were you being supported during this time? Was your family there to support you? [Erin: sighs] Do you think…what part of your work as a caregiver, do you think maybe your, your family didn’t see?
Erin: I think sometimes people – well, in regards to family – I think some people do what they can. You know, my brother has a family. I just don’t think he had the capacity of being there as much as he might…I don’t know if he felt like he should have been there and just couldn’t or, you know, there were definitely moments where I was like, “I need you and I shouldn’t have to explain why I need you right now.”
You know, but he does have a family and depends on if they’re supportive of them, you know, leaving and being away. And my father, you know, he was there at the hospital, a lot of times we would switch roles, he just wouldn’t stay over because it was, you know, he’s older and it was too much on his body to, [Jodi-Ann: Mmm] you know, sleep in a reclining chair that doesn’t doesn’t recline all the way, you know? *both chuckle* [Jodi-Ann: Yeah.] He did it once or twice and he’s like, “I really can’t.”
So, you know, I’m not someone who asks for help. So I think if it’s a friend who, and-and, you know, this friend who told me to come to New York came from a space of having been a caretaker. He knew. And he, you know, he explained to me what he did wrong in terms of taking care of himself. And, you know, gave me the advice, like, “You need to work out. You need to do something.” So I think if you’re a friend who hasn’t been through it, I think the key is to try to bring as much normalcy to them versus asking them to-questions about it and trying to figure it out. You know? If-if you’re around to take them to dinner, to lunch and talk about some other stuff, unless, you know, unless the caretaker brings it up themselves. Or if you’re, if you’re able to do things just to bring some level of normalcy, or having conversations that don’t make it emotional or uncomfortable. Nobody wants to tell-talk about how they had to help their mom do number two, you know, and how, how intimate that scenario was. *chuckles* You know, like, if you really want to know about my day, like, no one really wants to go back over that. [Jodi-Ann: chuckles]
Or that, you know, their mom just fought them, or they had to, you know. So I think that’s what he did. It wasn’t about talking about it. It was, and they probably-they would have been a sounding ear – sure – if I wanted to talk about it. But it was about going to the movies and spending time, going to dinner, you know, like, just normal stuff. And I think that’s hard for people to really understand, you know, as a friend, supporter, what angle to come from, unless you’ve unless you’ve been there. You know? And it’s hard to articulate – especially for someone who doesn’t ask for help – or to even know what you need, you know, because you’re just not thinking about yourself. So I mean, I think my dad was supportive in the sense that when I finally started to be like, “I need to get out at night,” he would just take over and sleep downstairs on the couch and be like, “Go,” you know?
Jodi-Ann: Yeah. [Erin: MmHmm] I think there’s, there’s two parts of it, right, of – I’m in this caretaking role – for people who are outside of that, who want to support me, not really asking me about it, but I don’t know, taking me to go get my nails done, right? Like, treat me like a normal person and give space for me to open up if I do want to talk about anything. [Erin: Right.] Like that’s the normalcy that you’re talking about. On the flip side, I’m curious if you have any advice for other people who are in caretaking roles right now?
Erin: Oh, my gosh, um…I think if you’re, you know, if you’re thrown into it and – I’d say anything I would do differently would be…as much as I wanted to be there and make sure she was okay, then she’s only going to be as okay as me. And even though I could function well, I think in her moments of being able to, being clear headed and things like that, she wasn’t expecting me to be there. She didn’t demand me to be there and she would have been okay, if I didn’t show up a night or something. So it really had to do with me.
So getting sleep or taking a nap, going to the gym, taking walks, telling your friends that need their support and ways of in terms of bringing normalcy, not necessarily bring it up unless you tell them that’s what you need. And I think even for my other friend who had been through it, that’s what you find is the difference. Is people who have been-been through it are not going to really ask you about it in regards to, “What did you do? What did you have to do?” You know like, they want to know if she’s okay, but if you just found out something horrible. *chuckles* Like, ugh, to have to speak those words is so traumatizing, you know, if you haven’t had the time to accept it yourself.
So I would just communicate to your inner circle and outer circles, kind of like, how you, how you need them to show up. But also, if you do not want people around you, just to let them know. I think when I said like, “I’m not okay. But please don’t,” you know, “Please try to refrain from asking me questions, I’ll reach out.” All those things, I think are-are important, so that they, you know, you just go missing in action. But I agree with my friend like working out, which I definitely scaled back on, having something that’s going to take – give you some mental like, rejuvenation, I think, is-is so important. You know, so there’s a lot of things that you do wrong as a caretaker when it comes to yourself, and you’ve become…and you’re so tired afterwards. So it’s just, it’s really hard to juggle when, you know, it’s not about you. [Jodi-Ann: Yeah.] Mmhmm.
Jodi-Ann: Yeah I mean, it’s not about you. But there’s so much about you that shifts, [Erin: Right.] And then there’s so much about you, in your relationship with this person that shifts. I mean, you spent a lot of intimate time with her, [Erin: MmHmm] not just in the hospital, but now you’re quarantining with her [Erin: MmHmm] and supporting her at home during COVID. Which, who knows when that will shift? And so I’m curious, you know, like, how, how has your relationship with your-your mom shifted during all this time?
Erin: *chuckles* Ah, that’s funny, because I think it was still closer, I think, but I think we’re even closer when she was, when she relied on me more, more intimate. Like, I think we held hands in the hospital and, and, you know, I would just, you know, sleep in the bed with her. And I don’t know, I don’t remember the conversations we were having, because I don’t remember how, like I said, clear headed she was, but you know, it’s definitely changed since before everything.
But she is also changed. So, I will say that she’s gotten a lot better. She’s, you know, more independent, – so she’s not, she doesn’t rely on me as much, which has lifted, like, a huge weight off of my shoulders in terms of, you know, what I had to do every day. But she’s definitely, you know, like, I see her speaking up more, not caring, *chuckles* or, you know, kind of like I said, She’s naked more or she’s, you know, like, she’s definitely changed in the sense of, you know, recognizing, I think to some degree, what she went through. I don’t think she really understands how bad things were.
And I actually recently have been reflecting on it, because I’m like, Man, I really haven’t done much work in regards to my own self and what I’ve had to deal with, when it comes to caretaking this year. And looking through photos and being like, Oh my gosh, I can’t believe that’s what she looks like, and how much weight she lost. And, you know, I told her, I was like, “I don’t know if you know…” and she was like, “I’d be interested in looking at photos.”
And you know, I’ll show her but it’s, even though I’ve seen them several times, it still brings up all those crazy moments and just I just have been reflecting on, Oh my gosh, I can’t believe that that’s what I was doing on a daily. Or I can’t believe that day. Oh my gosh, I remember that day, you know? Like, She had a really bad mood from being stagnant and laying down and I became the wound care nurse and having to see a deep, deep wound. And in an area that’s not a cool area to have a wound. I was like, Oh my gosh, I had to figure out how to use a wound vac. And I like I was like, Oh my gosh, I was an expert in everything, you know? *both laugh* I’m rambling now, but I was just going back like, Oh my gosh. *chuckles* Wound care nurse. I forgot I was a wound care nurse too! *laughs*
Jodi-Ann: Watching you, like, I’m looking at your face right now just kind of reliving [Erin: still laughing] it in this sense, because you’re not out of it. [Erin: MmHmm] You know, you’re still in it and I totally get around, you have your own processing time. Like you have your own traumas. And it takes a period to even understand what it means to not just be a witness to someone, a parent, who’s fighting for their lives, but to be someone who’s actively part of you know, as you say, bringing them back to health. And being, you know, alongside them in that fight.
Erin: Yeah. Yeah. Yeah, it’s, it’s, um, I think my parents, they, they gifted me with some money to be able to take a trip because, you know, just to thank me they know that if it wasn’t for me, they are not sure how things…and that was kind of the first time that I recognized the major role that I had, and like, how it impacted her health. On top of a few other people who had seen her and now see her and they’re like, “Erin, like you, really, were the significant reason why…” you know, like, “We know that’s the case.” But because of COVID, I couldn’t just run out and go sit on a beach somewhere and reflect and take time for myself, you know.
It was like I was cooped up in a room, or in a house, and my mom was able to talk now, and I didn’t want to be around anyone, but I had to be. So you know, so it’s like, it’s definitely been an interesting time for, you know, for sure. But I think not having – having the space to, to be able to do that. I will say another key thing, even though I’m actively searching for a counselor slash therapist, is for people who are both in the scenario of having to deal with a diagnosis, and for a caretaker, I think having the right therapist to have weekly sessions with is important.
And I had started therapy right before it got really bad and couldn’t keep up with them because I was in the hospital. And there became a point because I actually was thrown into another caretaking situation during COVID with another family member, that I almost broke. And it was evidence, I could feel, like, the anxiety in my skin. It was really like it was hard to touch my skin. But I also know that it was probably just remnants also from my mom. If I didn’t, if I hadn’t had to deal with my mom, I – I would probably be able to handle that without having reached that point. But I was already at boiling point from everything, even though I felt okay. And so I think to make sure you jump on starting to see someone early on.
Jodi-Ann: One visual that I’ve used to describe kind of what you’re talking about is, you know when you overfill a hot cup with what, hot coffee or water or tea or what have you, you know, maybe you can sip a little off or you spill a little bit off, but it’s still pretty full? [Erin: MmHmm] Like, that’s how I felt. And you know, how you’re describing it is reminding me of that. Like, you’re already full. Your cup is full. [Erin: Yeah.] And maybe you’ve done little things to get it down a little bit, but you don’t have that much space. Right? [Erin: Right.] And so once other things start piling in, then you can get into this overflow situation because you haven’t been able to empty the cup a little bit more. [Erin: Right.] Right? [Erin: Yeah.] It’s just, you can just get, you get overwhelmed over overflow.[Erin: Right. For sure.] And probably quicker than you would have if you didn’t already have such a full cup.
Erin: Right. Exactly. So it’s just being aware of that and-and you know, because when you’re caretaking a lot of your-everything about you goes out the window. And so when you start-when you’re able to, and – hopefully you’re able to start bringing regular normal life things back in – those are already stressors, you know? Regardless, you face challenges every day. So if you’re already there, and like I said I was functioning well, but it’s still traumatic. It’s a trauma-based experience that you just adjust to, you know? And so when you figure out how to do it, you just go, you just do it, you know? And you’re not really knowing the impact it’s having on you.
Jodi-Ann: Do you feel like you were putting some of that energy… trying to, I don’t even know how to phrase it, like, compartmentalizing some of that trauma or trying to express or release some of that stress by working on the Black Burner Project?
Erin: I think the Black Burner Project was probably the only thing that I worked on during that time, so it did bring me a level of, like, normalcy or being able to work on something myself. Like, I definitely put together the entire website [Jodi-Ann: laughs] in the hospital at night: 2am, 3am, 4am. *laughs* You know, like, that’s when I worked on it. And because even – there were so many nights where, yeah, I was in a reclining chair, but I couldn’t sleep, you know? Didn’t sleep whatsoever on top of, you know, the nurse having to come in every two hours. So, I think, so, there was a lot that I wasn’t able to do, because I just didn’t have time to focus on anything. Which was, you know, it was kind of upsetting because I had gained such huge recognition really shortly after I came back, which was really close to when my mom went into the hospital. So it was like, on this whole high after the last Burning Man, and then I kind of had to, like, halt it, you know? But if I remember correctly, that is basically the only thing that I worked on when I could, and knowing the impact that it was making, and I think seeing-getting so many messages from people helped me, you know, out a lot about the work that I was doing, even though I wasn’t able to actively do stuff as much as I wanted to. That was when, like, I was getting a lot from people. That was driving me. Um, so that, was that was helpful indeed. *laughs*
Jodi-Ann: Yeah, I mean, you know, people talk about things being a labor of love, which I think maybe a lot of the caregiving was. I’m gonna project some things onto your experience here, but sometimes the things that we are also working on that people think are so cool, and “Oh my gosh, that’s so great!”, like, I remember seeing your photos and your article in Essence magazine, and, you know, there are parts of our lives that are also labors of trauma, too. [Erin: MmHmm.] Like, getting all that stuff up. And so if you get to share with the listeners what the Burning Man project is, this labor of love and trauma in some sense, of that being your outlet during this time period of following up on the work that you had for it before your mom was hospitalized.
Erin: Yes. So Burning Man, really quickly, if you don’t know, is a yearly event that takes place in the desert, except for 2020. *both laugh* But normally, it’s a yearly event that’s been going on for, I don’t know, some odd 25 or 30 years. And where about 70 to 80,000 people go convene, and live for about a week or more to create a temporary city. They build and create a temporary city that’s functioning outside of running water. And they live based off of 10 principles including like, radical inclusion, self expression, self reliance, and it’s a powerful experience, I will say, that’s not diverse. And I was introduced to it by a friend, and I was very nervous about it. I had never camped. And after my first year, I wasn’t sure how I felt about it, I just knew it was an experience and unique. But after so many people reached out to me – not particularly because I was sharing photos of people of color, I think it was because I was a Black woman and they could reach out to me knowing that they didn’t know someone who looked like them who went, they all expressed the same thing: That they had heard – they had known about Burning Man and was interested but didn’t go because they didn’t think it was a place for them. They didn’t see Black or Brown people, they figured it wasn’t for us, we don’t do it, we weren’t welcomed, whatever it might be.
So I decided to go back, if everything aligned, the second year, and take photos of people of color, and to post and to hopefully have an exhibit or maybe a book later. And yeah, and – and I kind of just built it off of this idea that was very scary for me. Because it was just a random idea that I was like, okay, like, why do I have this idea? And why is it nudging me within? And, what is this going to do? I wasn’t really sure what – how I was going to do it or anything. And it just really grew.
Yeah, and only because people have expressed the impact do I know the impact that it’s making, on encouraging people to be opened up to it and to let people know that it is a welcoming space for them. And because Burning Man is such a, what they call “a permission engine space” where it gives you permission to be yourself, and to be creative and to do whatever you feel, I was, I – you know, I was coming off of that going into, you know, being a caretaker. And so it was, it was hard to have to give up that time coming off of that energy and knowing the success I had that second year of bringing over 200 burners of color together for a group photo. That never has happened before. And having to kind of, like, push that, to push that aside.
But I knew the importance of it for me to keep going, too, so I would just use that time at night to, you know, stick to some of the goals I had, like the website – which I haven’t been on in a while *laughs* but – but like the website, and like, you know, trying to keep up with photos. So, you know, when my mom finally went to sleep, then I would post something or respond to a message. So yeah, I think that might be the only thing when it comes to passion work that I was able to, you know, dabble in a little bit. Which was aligning, because although I shoot everything I’m not extremely passionate about, like events. I’m good at it, but it’s not something that inspires me, and, you know, is super fulfilling when it comes to taking the photos and then, you know, editing them, you know? So I think it was helpful to have that new content to be able to work with when I was sitting in the hospital.
Jodi-Ann: Yeah, yeah. Well, I would say that checking out your Instagram Lives, and your incredible – I mean, I cannot express this – incredible photos. I mean, your photos for the Burning Man project are unlike anything I’ve seen, just visually so striking. And so that would definitely be my recommendation to listeners to check out the Black Burner Project and all your incredible work on that. And so I’m curious for you, I always like to ask my guests for listener recommendations: I want to know something to read, and something to listen to.
Erin: So I did re-read The Alchemist just now, because I was like, You know what, I really need to go through this journey with this – this boy. Because I know although I read it before, and it was aligned in that part of my life as well, it was super something that I needed to read. So if you haven’t read it, or if you haven’t read it a long time, and you’re kind of going through a little- especially during this now, I would say do that.
And someone to know… one I would say because we were just talking about Burning Man. Burning Man is a space that you do a lot of inner work without knowing that you’re doing inner work. And so knowing yourself – which I don’t think a lot of people get to, and not that you know all of yourself just because you’re doing inner work, I think it’s a lifelong journey. But I think a lot of us don’t even know the main parts of ourselves. You know, because we’re living in a, like, society that sets these norms for you. And so I say one, get to know yourself, – whatever that means. And you know, to be okay with whoever you are, that means you’re different than your friends, then that’s what it is. But I, you know, this year has definitely – even though it’s still a daily struggle and challenge for me – it’s definitely been eye opening.
And listen to.. Oh, I would say I’ve been listening to Jodi-Ann. *both laugh* I think you’re doing great work. And you’re just so smart. And I’m like, Oh, I want to be smart like Jodi! [Jodi-Ann: laughs] So yes, you and I actually also would listen to my friend Robin, Robin Arzón. I listened to a talk she had with, I think it’s Makers Women, and I don’t always – you know, I’m not always paying attention to all the talks that she’s having with people, but I mean, I was writing notes down and she’s just such an inspiration. So if you have a friend or if you don’t know Robin, I would say listen to her, because she’s a badass woman who’s doing a lot and I’m lucky to know her and glad I have the mental capacity to be able to, like, separate myself and take notes from someone that I look up to. Like real notes in my notebook. And so she – I would say she’s a great person to listen to, too.
Jodi-Ann: Yeah, I need to – I only listen to her when I’m on my Peoton. [Erin: Oh, yeah.] *both laugh* Great work there. No, it’s – it’s so interesting to know someone and admire them, and to be able to learn from them, I think is… it’s so important. And I feel that way about you. To sit here with you and learn from you, and understand my own experience in new ways. And I think, learn more about you and deepen our friendship [Erin: MmHmm] in new ways. And so I’m just so grateful for you and having you in my life, and having you a part of this project. I mean, who woulda thunk it? We met at a gym. [Erin: laughs] Taking a hip hop class together. And fast forward, we’re sitting here and talking about cancer. *laughs*
Erin: I know, oh, my gosh, it’s been… Oh, yeah. It’s crazy to just think about it all. So…
Jodi-Ann: Thanks so much, Erin.
Erin: Thank you, girl.
Jodi-Ann: You, too.
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Black Cancer was created, edited and produced by me, Jodi-Ann Burey. Thank you so much, Erin, for sharing your story with us. To make sure that other Black Cancer stories become center to how we talk about cancer, there’s something you can do. Rate, subscribe, leave a review wherever you find your podcasts. You can find us online at blackcancer.co and on Instagram at @_black_cancer. Trauma comes with endless wisdom for ourselves and those around us. Tell someone you know about Black Cancer.
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