The Black Cancer Podcast
Episode 3: Trained Self Preservation Mode (with Juliette Austin)
Running time: 96:22
Juliette: I try to live my life in this fearless way. And it’s been a mantra for myself for years now. Being courageous, being fearless, facing everything. And for years I didn’t talk about my diagnosis openly. I had a really ugly experience in the workplace. When I shared what I was going through, my workplace was not, um, as warm as yours. It was actually very toxic and created a lot of trauma for me. I was struggling a lot. I learned – to just bury it all. Like, you look normal, so act normal. [Jodi-Ann: Mmm.]
[Theme music starts]
Jodi-Ann (as host): Welcome to Black Cancer. I’m your host Jodi-Ann. Today’s guest is Juliette Austin – a Haitian American New Yorker who works in corporate diversity. Juliette says she is counting her blessings and staying focused on positively impacting her community. She’s also a thyroid cancer survivor. I’ve known Juliette much longer than knowing she had once had thyroid cancer. She and I met professionally and our friendship has truly grown from there. In this episode, Julia and I share some pretty tender conversations about why she withheld this part of herself from me for so long. As you might have guessed from what you just heard at the top of this episode, it has a big part to do with the toxic, likely illegal, way Juliette was treated when she disclosed her diagnosis at work nearly a decade ago. We talk about wrestling with internalized ableism, finding new ways to trust ourselves, and figuring out what we need to let go of to heal. We start today’s episode with a new life update from Juliette. Before logging into our call, Juliette had just left her new thyroid cancer support group meeting. Here’s my conversation with Juliette. You’ll hear Juliette’s voice first.
[Music fades, snaps into silence.]
Juliette: Girl, I’m making changes. I’m doing things differently. Yes! *chuckles*
Jodi-Ann: How was that?
Juliette: Um, it was good. Well, when I say good, it was-it’s good. It was a good reminder that I’m not alone in this space. And like, the first time I joined that call, I had this “oh shit” moment of like, everybody’s describing exactly the things that I’ve been feeling for the last eight years. And then you can fit – and this sounds terrible – but you can see how every person is suffering in some way. Or like some person is manifesting, you know, or showing some symptom. You have one woman who could barely say her name because her brain fog was so heavy and she was so tired. And then another person who’s physically in pain. Another person is like experiencing depression, um, or something – and-and it was like, I-I know all of this. I see like, I’m like all of these people rolled up into one.
Jodi-Ann: Yeah. Oh my god. I felt that way when I was very briefly in a spinal cord injury group. And, I had never met other people who had spinal cord injuries. Like the group was super diverse, right? There was maybe one or two people that were complete quadriplegics. Um, and then there are a bunch of folks who had some mobility, spent some time in a wheelchair, spent some time, you know, on a cane. I think I was the most mobile in the group. But even though our manifestations of our spinal cord injuries were so different, I still saw myself in every one in some way. And there was this unlocking of, oh my god, this is my people. But like in a different way, particularly as Black women that we understand our people, quote unquote, right? [Juliette: right-right] *both chuckle*
Juliette: That’s exactly what I felt like I was like, Oh-I, okay, this is my my – this is a tribe that I didn’t have – I didn’t know I had before.
Jodi-Ann: Yeah, I’m glad you even found it. Like, what made you look for it?
Juliette: Well, um, interestingly enough, I-I always knew about it. [Jodi-Ann: Ooo.] I always knew about it. Um, I always – I was in there, their online chats, groups. Early on, I would be plugged into it, but I never really interacted with anybody. And then at some point, it was too much for me. And I checked out of it altogether. But I’ve never, like deleted it, or anything like that. I knew it was always there. I just, I think emotionally I just couldn’t handle…being in the group at that point in time.
Jodi-Ann: Damn. So how long do you know about until you’re like, Alright, I’m gonna engage.
Juliette: Last…yeah, it was last month, I decided to engage. And that was a lot – it stems a lot from our conversations. [Jodi-Ann: Yeah.] And, um, me facing like, What’s my, my leading my edge here and my growth in evolution? What’s that fear? What are the things that I’m not facing? And talking about and experiencing and being courageous about, right? That was one of them. And I’m like, I have access to this. I know it’s there. And when you shared your experience about the group that you participated in, I was like alright. I honestly, I didn’t want to join it. I did not want to go – and I was so *laughs* afraid to get on that call. And, but I did, and I’m the only Black woman there. Well, there was-there, at that time, there was another Black woman there. But um, she wasn’t on today, but It wasn’t as bad as I thought it was gonna be. I’m in a better place emotionally to deal with it. And it turned out that there was something I could offer [Jodi-Ann: Ooo.] in health, you know, in support of others too. And so that also felt good, as well.
Jodi-Ann: *exhale* You know, I hope you’ve seen this group as long as it serves you, but sometimes I’m kicking myself like, Man, I should have stayed in the spinal cord injury group. But that was happening around the time that George Floyd was murdered, and, like, racial uprises happening, and I couldn’t stand being in the group. I emailed the head of the study and I was just like, “This is a national study. Spinal cord injuries aren’t like special things, right? Most people get spinal cord injuries just from driving or like having some type of acute trauma in some way. And so, it should at least match population data in terms of representation. Right? If it’s like, it can-it can be a random occurrence in that way. And so, why am I the only Black person in this group?” And then they’re asking me if I know anyone. Um, why do you think I’m in this group? I don’t know people with spinal cord injury. *laughs*
Juliette: It’s like, it’s like, yeah, let me bring all my Black spinal cord injury friends with me. You know, like, *laughs* where do you think…*laughs*
Jodi-Ann: Oh my god, like, why do you think I showed up? And if you’re not in it, just like retriggered me around like COVID and Fauci and Rhett Presley, and Elizabeth Warren advocating for race data around what was going on with COVID-19. And it’s like, if that wasn’t part of your analysis at the outset, like right in the beginning, what are you doing?
Juliette: Right, um, and it wasn’t part of their analysis at the outset because race – well, we can-we can – This is…we’re going down the rabbit hole. [Jodi-Ann: I know. *both laugh*] With that one. I was like, if we could break it, we can break the whole – you know, systemic of…all of that around COVID and why is not part of it – the conversation. Or, you know, their-their studies to begin with. Incidentally, I struggled in that in my last role, you know, when I-when I, what I would see as really well intentioned people thinking that they’re doing really great things, and not realizing that we’re not all the same. [Jodi-Ann: Ughhh.]
And that’s hard for people to grasp that we are not all the same.
Jodi-Ann: But here’s one thing I want to challenge, though. At this day and age, with this much information access, with this, this much, much history around race and the healthcare system – can you be well-intentioned?
Juliette: Mmm, that’s a great point.
Jodi-Ann: Like, can you be well-intentioned? You are at the highest level of your industry. You are talking about health – at a population level.
Juliette: Great, great question. And I [Jodi-Ann: chuckles] and-and you’re right. You’re absolutely right. Because I use the word “well-intentioned” to where…and it’s given way too much credit. We have to start the conversation where it’s not, “Oh, I didn’t know” – it’s, “Why didn’t you care enough to know?” [Jodi-Ann: Thank you.]
Jodi-Ann: You have every opportunity to know. [Juliette: Yeah.] And every time you get on your Instagram and you just scrollin’ nonsense, is you making an active decision not to know [Juliette: Mmhmm..] ‘cause you could spend that 15 – 20 minutes trying to find out what’s up.
We didn’t even start the podcast. *laughs* All of this is recording, but – [Juliette: We just jumped right in.] we just like…*laughs*
Juliette: But you know what, what I love is that that’s how you and I roll. We – it can be like two weeks since we spoken to each other and jump right back in [Jodi-Ann laughs]. You know, and *laughs* um, and we have a good flow. I-I appreciate that we just jump right into it, into the conversation.
Jodi-Ann: I think that’s important too – for people to understand that…your life and cancer, it’s connected, right? So there’s no, “Okay, let me go over here. Now I’m going to be a thyroid cancer patient survivor. All right, let me step over here and I’m going to be a Black person or now I’m going to be a friend” Like, all of these mix and intermingle. And so, I think like, at least when I talk to people who don’t have experiences with cancer, it’s very hard for them to enter into a cancer conversation. Because they feel – they get real solemn and feel like, “Oh, I’m so sorry…” *laughs*
Juliette: I actually had this conversation yesterday with a friend of mine, um, who didn’t know up until yesterday that – he’s a fairly new friend. Like, I was having a flare up, and I couldn’t sleep, and he just – we just happened to get on the call together. And of course, he’s asking me what, “What’s wrong? What’s going on?” Etc. And I’m like, Shit. [Jodi-Ann laughs] I don’t want to go through this right now. Like, I don’t want to explain it. I can’t. It’s – he won’t understand. In my head. I’m like, I know he’s not gonna understand. I don’t want to have to explain it. I don’t – I’m already feeling like shit. It’s gonna feel like shit to talk about this right now. And because I already know [Jodi-Ann: Mmm.] what’s gonna happen. And, he challenged me and he was like, “Listen, if we’re friends, we’re going to talk about this”, you know. And, and so fine. I just kind of leaned into it. And I told him, I was like, “Hey, I’m a thyroid cancer survivor. I was diagnosed eight years ago. I’m just having, like, a moment right now where – and this is just how my body…” And I’m talking to him and, and we’re on FaceTime and you could just see his face – [Jodi-Ann laughs] just…like his eyes bulged out of his head. You know what mean? [Jodi-Ann: Yeah.] He’s just like, his eyes got big. He got like – the mood totally changed. And he was like, in shock. He’s like, “Whoa, I did not expect you to tell me this, um, that-that’s, that’s a lot. [Jodi-Ann sighs] And in my head I’m like, What you think this a lie? You think? You know?
Jodi-Ann: You think? Welcome to my life. *Both laugh*
Juliette: Um, and he – I know, he was trying to be supportive. And like, encouraging me, and say like, “Hey, you’re going to be okay. You’re fine.” You know, like all of this stuff [Jodi-Ann: Yeah. Platitudes. The Platitudes start coming in.] And then he said – and I’m gonna get emotional about – because it just really hit me – and he said, “Yeah, well, you’re not missing an arm. You’re not missing a leg.You’re still breathing. And so yeah, you’re fine.”…kind of thing.
And that was just like a punch in my face. And ‘cause I knew it was coming, and I was praying it wouldn’t and that’s why I didn’t want to have that conversation. *voice shaking a little* And that’s why it’s so hard for me to have this conversation…And that’s part of the reason why I never did talk about it for so long. ‘Cause I don’t want to get into this space of, “Oh, how bad could it possibly be? You’re-you look fine. You got both your legs. You got both your arms. You’re walking, you’re talking. And so, you must be fine. Like, hey, you’re-you’re, you’re living. Just…be happy with that.” You know? And that just sucked. That just really sucked. And-and, but I paused him real quick and I was like, “I am not going to accept this. *chuckle* Let me explain something to you. And I went down, I broke it down even further. So now I’m deep in this conversation now. Now I’m invested into this conversation even more. And so I spent a good amount of time explaining to him exactly what it meant to have thyroid cancer. And how doctors are really great at treating thyroid cancer, like, they’re great at giving you radiation or cutting out and all this other BS, but they don’t know how to give you quality of life after.
Jodi-Ann: And quality of life in the way that you define it.
Juliette: Yes, yes. They don’t know how to treat that. And so, yeah, I might be living and breathing and you know, have all my limbs. And I said to him, I said, I would actu-I was like, this is where I’m at…”I would rather give up my right arm. If somebody told me you have an option of – like if we can give you your thyroid back, but you have to give up your right arm? I would give up my right arm, without even questioning it.” And that’s when he fell out. He was like, “Whoa, that’s serious. Like you would actually sacrifice the limb?” I’m like, “Yeah, so that, so in other words, what you just said – is so – like, you don’t understand how I *sigh* what it means. Like, I would give that up just to have my thyroid back.” So to the hell with a limb. *laughs* [Jodi-Ann:Yep.] Thyroid is more important right now than my freakin’ right arm. *laughs* [Jodi-Ann: Yeah.]
Jodi-Ann: Yeah, ughh. No, this hits me so hard because I had the same experience, right? “Listen, Jodi-Ann spinal cord injury, you could have been a quadriplegic, but you’re walking around. You can do this, you can do that. Like, it’s okay.” Same thing, and, especially when you’re in a moment of vulnerability. When you are trying to explain something to somebody that you already know that they’re not going to be able to understand. And the first thing that comes out of your mouth – out of their mouths – erases you. Completely invalidates the thing that you have to struggle with every single moment of every single day.
They’re just like, “It’s fine.” That you shouldn’t be bothered with that. And I think that’s-that’s something that I came to a realization too. So, when I was facing my situation, I just remember before my surgery, I just be crying. Like, I just want a chance. I just want a chance. I just want to wake up from surgery and be able to move. I’ll put in the work. I’ll learn how to walk. I’ll learn how to use my hands again, I will try, I just want a chance. Because once your, your central nervous system is shot like – you don’t-you don’t get those nerves back. So any wrong cut or whatever would have could have gone awry in the surgery that would have made me a complete quadriplegic from the neck down. All I wanted, all I wanted was a chance.
Juliette: Opportunity. Yeah. To-to do the work, you just…
Jodi-Ann: I just wanted to do the work. Fast forward when I was in the work and then even got beyond the work when I – my physical disability that was very, very visible, became invisible. And I was sitting with the pain. [Juliette: Mmm.] Like I have, I have been in pain for two and a half years. I’m sitting here right now, I can tell you everywhere my body that’s inflamed and hurting right now. And in this moment, I’m like, Damn, I wonder if it would have been better if I was a quadriplegic, like a complete quadriplegic. That I would actually give up mobility in order to not be in pain. And I thought that I was nuts for thinking that because of what everyone tells you…“At least you can walk. At least you look fine.” Like, these are good things.
And then my doctor, who I mean, I’ve been in this journey with him for many, many years, before diagnosis and after. And he knows…now I can actually get that like, patient-centered care. And he’s like, I’m literally going to photocopy a peer reviewed medical article for her right now, because that’s the level of information I want. And had his medical assistant copy out this article that just came out. That is written for doctors, right, about the experiences of people with spinal cord injury and their relationship to pain. And the first couple of paragraphs, I’m just reading all this data about how 50% to like the 75%, you know, big majorities of people also would give up mobility in order to not be in pain. And I cried. [Juliette: Yeah.] There was a huge relief because I felt normal. *chuckle* It, I felt like the way I was thinking about it, maybe it actually made sense. Maybe like, my thinking around it isn’t wild. And, and I think that kind of links back to what you’re talking about – about, you know, being in the thyroid group.
Juliette: Yeah, yeah. I mean, you know, that study is so important because I – and the realization from that is so important, because I also had a similar situation where I was reading some of the peer reviewed studies about how thyroid cancer is treated. And, there was a – there’s new data and information now that says that they probably wouldn’t recommend total thyroidectomy for even a case like mine. And to think that something could have been done differently…like, that floored me. And then, and I shared, I – there were moments of the years where I share with family and friends that if I had to do it all over again, I wouldn’t have elected to have it even removed. And they’re like, “How could you think of such a thing? That’s wild! That’s crazy. This is terrible.” And I felt like a – like you. Like, this is “wild, crazy thinking”. Like, why would we ever opt for something like this? Why would you want to be a quad-you know, in a wheelchair? Or confined in some way without mobility? Why would I want to live with cancer in my, in my body? And – and so I felt bad for a long time for even thinking that way. [Jodi-Ann:Yeah.]
Like, Oh, I’ve completely lost it. But I – but it never it never left my mind. And I was like, No, that’s exactly what I would do. Like, *both chuckle* if I had a chance, like that is exactly what I do. And so, when I found this group, and I’ve spoken to others and realized it wasn’t that crazy to think about it that way ‘cause other people were feeling the same way. They, they…they would have made a different choice. And they actually feel like what the quality of life that they’re living now, is so drastically different and painful, that the other option seems better. But there’s no way to ever know that for sure. Right? ‘Cause the other option could have invited a whole different set of problems in and of itself [Jodi-Ann: Exactly.] And I – and my conclusion – or my where I’m just kind of stirring around with it in my head, is that there’s no good answer to this, at all. You know, like, we made that – we did the best that we could with the information that we had at that time. What more can…I and, I and – I still struggle with that. I have to remind myself and literally say those words to myself of, I made the best decision at the time with the information that I had. And that I know I personally researched and went out for, and did, and learned. Things changed. Things changed – and that’s just, that’s the-the cards that I was dealt, that you were dealt. And so, I think it would have required strength and it would, would be a struggle with either decision, um, in the end.
Jodi-Ann: The mantras we tell ourselves to just…kind of make it through. [Juliette: Yeah.] And the frequency in which we have to have these conversations with our self. It matters to know that there are other people who are also going through that, you know? *both chuckle*
Juliette: It matters, but think – okay, well, I don’t know. I go through a whole list of conversations with myself every morning. Like and, and I’ve gotten so good at it, like I don’t even realize I’m having these conversations with myself before I even get out of bed. *laughs*
Jodi-Ann: Okay, so I want to hear what these conversations are ‘cause I also talk, I also have conversations before I get out of bed and I’m curious what yours are. *laughs*
Juliette: Oh man. One is like, I’ll open my eyes…and it’s like this instantly go into a full body scan. Like, mental full body scan – top to bottom of, Okay, how does my legs feel today? How do – how does my back feel today? Like it, can I – wha…and I and I’ll move, you know. Obviously I’m starting to move…and like, Alright Juliette, how you feel? What’s today gonna be like?
It’s like, okay. What’s…you know, this is an assessment. What’s today’s good – what’s, what’s hurting? How you feelin? What’s today going to be like? And I’ll say, Okay, no matter what Juliette, you’re going to have to make this as best of a day as possible. What do you need? And I’m talking to myself – what do I need today? Then I’ll get up and I’ll be in pain. I’m creaking. I’m like, balled up like it’s – like I have to unravel myself. You know and, and like, just struggling. And then I’m just saying, Okay, no, you’re going to be okay. And in my head as I’m preparing myself for the day, I’m thinking, Okay, where in the day do I either need to take a break – where in the day is there something that I can reschedule or cancel? [Jodi-Ann: Yup. *chuckles*] ‘Cause know that at some point, and this is if I’m not having a great, you know, morning – I know at some point I won’t be able to make it. I won’t be able to make it through the whole day. So in my head, I’m calculating Okay, what is, what will this day look like? And sched-, and like, just scheduling it. What do I need to eat? Is there something that I know that’s going to help give me energy? What do I not need to eat? It’s-it’s all of these conversations, but it always ends – or my mantra is – you’re going to be okay. You’re going to be okay. Today’s one day tomorrow will be better, but you’re going to be okay.
Jodi-Ann: I want to cry so hard, because I have the same conversations. But what’s different, that’s making me emotional right now, is I don’t tell myself that I’m going to be okay [Juliette: mmm]. I don’t know if I…I don’t know if I speak to myself or treat myself that way *takes deep breath*. The way I’ve described it was like, I was just in this pit, in this pit. And I tried to get out of this pit a couple of times. And I’m like, Fuck it. I’m just going to stay here. The pit’s not that bad. I’m just gonna be some bitter bitch *laughs* and mad at the world.
Juliette: And comfortable in your pit.
Jodi-Ann: Yeah, I was like finding comfort in my pit, in my bitterness, in my despair. I’ve already prepared myself to die, so…whatever. That was me for a really long time.
What my morning conversations look like, same thing. I do the body scan. And I do these little tests with myself. Do you know where your feet are? Because my – I have so much numbness everywhere. Okay, do you know where your feet are? Can you tell if your foot is under the sheet or over the sheet? [Juliette: mmm] And sometimes I’m right. And sometimes I’m not *laughs*. You know, there’s times where my feet are crossed, and I-I’m trying to move the foot that’s under, and I can’t move the foot. And so I have this freakout moment of like, oh my gosh, I lost my leg. I lost my leg. Why can’t I move it? And it’s because my other foot’s on top and I don’t have a sense of that yet. So it’s like, okay, what hurts? What do I have to do today? And I’m just like, I should do yoga. I don’t feel like doing yoga *laughs*. I should stretch. Like, here all these things I could make myself feel better. I’m like, it’s going to be a struggle. I’m not going to do it as well as I used to. I’m in so much pain. Then I pulled the calendar up – same thing. What do I have today? What can I cancel? *laughs* You know, if I’m already not feeling good.
Juliette: Then it goes into, okay, what do you need to do to make it through that?
Jodi-Ann: Exactly. And so I start running through all the things that I can say to create boundaries for myself, especially now in this, like, inside times. I’m already trying to perform, right? Like I’m trying to ignore the pain. And I don’t want that – I don’t want the visual pressure of that. And so, sometimes I won’t do the video so I can, um, just be sitting in a bra. Because when things touch my body, it makes me uncomfortable. And, like, how can I make myself comfortable. So, like, as soon as I roll out of bed, before I even go to the bathroom, I take a nerve – like my nerve medication.
Juliette: I know. But I strategically do the same thing, because I have to take my medication before I get out of bed. And so I live – everything’s perfect is, like, timed, right? [Jodi-Ann: Yes.] So you-you try to, like, okay, so…we’re dependent on that medicine. So much that you have to – you know when it’s about to kick in or you anticipate that-it kicking in so that we can function. [Jodi-Ann: Yeah.] Nothing happens until-until I start to feel something kick in. [Jodi-Ann: Yeah same here.] I literally get up two hours earlier than I have to because it takes me a full hour just to get out *both start laughing* of the bed. You know, or like just get my bearings. And that’s what I know it takes – an hour for the medication to kick it – it takes about that time. And uh, yeah, you got to give yourself a little bit more than the 20 minutes maybe.
Jodi-Ann: Listen, this is the story of my life. This is – *laughs*
Juliette: ‘cause, then you know, like, give it an hour and like, okay, the meds are gonna kick it.
Jodi-Ann: Mmhmm. This is the story of my life. Like, you know, and I’d love to chat about this with you too, but I still have most of my clothes that I had before my surgery. Even though I’ve gained 40 pounds. 40 pounds. That’s a four and a zero. *laughs* So, a lot of my time getting ready is just my mental and emotional relationship with my body and clothing, trying to figure out what still fits me. Should I try to lose the weight? Is it possible? But losing weight and exercise hurts my body that’s already hurting as soon as I wake up anyway. I don’t know, like, how has your thyroid cancer experience physically changed your body? Like who you are before your surgery and then after?
Juliette: Oh, gosh, it’s um – this is a completely new body and person. It’s so different. And I’m still learning to love this body. I feel like I, you know, there’s some days I’m okay with-with her. *both laugh* and there are other days I’m like, oh…‘cause I flashback and I think back and I hold on to so much of who I was before my diagnosis. And who I was before my diagnosis was a very active woman, um, who’s studying to be a personal trainer. Always in the gym. Love weight training. Love weight training. Love running. I would run about four days a week and weight train in between or after not, you know, so I – so for about 4-6 days a week I was in the gym doing something active. I did – I loved to dance. I did ballroom dancing for a while. But I was this person who had this like seemingly endless energy because I was still working 50 hours a week, if not more at times, and I still found the time to go to the gym and do all these things and go out to parties and clubs and hang out with my friends and…um, and almost overnight that ended. And within a month after my surgery I had already gained – it was about six weeks after my surgery – I had already gained 10 pounds. And I was at – the person that I was before – was, like, I understood my body so well, I had this wonderful relationship with my body. I was one of those people that, like, if I gained two pounds, I knew I gained two pounds. Or if I lost two pounds, I felt it and I knew exactly what I needed to do to, you know, regulate myself. And it wasn’t like I was always on a scale. It was just an intuition of relationship that I had with my body. Um, once I gained those 10 pounds – by the way before I went into surgery, I cranked out, like, 200 sit ups and push ups, like, [Jodi-Ann: Ayee. Ayeee.] I’m goin in. I’m goin hard. I did the best workout the night before. And…[Jodi-Ann: You’re wild. I was eating pasta. *laughs*] I guess I probably should have done that too, right? I could have at least enjoyed *laughs*, you know, enjoyed – instead I was torturing myself with a workout, right? [Jodi-Ann: Uh huh.]
Um, but that’s what I was doing. That was who I was. And then like, six weeks later, I hit a wall, I gained 10 pounds. What? How is that like – that’s not me. Like, and then it was a panic. There’s nothing I can – and I couldn’t work out. I physically couldn’t do it. My brain wasn’t working. My body’s doing this whole…I don’t know what the hell is going on. And so within just a few months, afterwards, I had gained almost 30 pounds, shortly after. And I still don’t understand my body. I don’t know what’s happening. I was going out. I was trying to work out again, but it wasn’t working. I adjusted my diet, it wasn’t working. And, I was – my weight was starting to – I just, was at a loss. And so, to make a long story short, I – it took awhile for me to get on the right medication. That’s the other problem with this um, with thyroid cancer, ‘cause they don’t know how to treat it very well. [Jodi-Ann: Yeah.] Like after a lot of fighting, I kinda got into a medication regimen that helped somewhat. It didn’t fix everything at all, but I was able to dial the weight back a little bit. Um, so I’m still about 20 pounds heavier than I was before my surgery. And no matter – it just seems like no matter what I do – it doesn’t want to go away. And I – so you imagine – like, a person is working out six days a week, and now, just for me to go for freakin’ walk…it’s just like…let me calculate this. *laughs* You know? Like, okay – I took my medication at such and such a time, which means that it has a half life of X number of hours. And so therefore, if I go for this walk, and I exert this amount of energy, I’m going to burn through that that’s left over, and I won’t have enough energy for what I need to do for the evening, because I want to hang out with my friends and actually be like, a nice person to hang out with. *both laugh* And so – *more laughter* and those are the calculations that I have in my head. So like, I don’t, you know, that’s-that’s life now.
Jodi-Ann: Yeah. And you’re eight years out of your diagnosis.
Juliette: I am. I still haven’t figured it out. So…I don’t know if there’s an answer to it.
Jodi-Ann: ‘cause I’m still not in that acceptance mode – having to do the calculation of, like, how my body feels and just being able to, like, get up and go. Like, the “get up and go” is not part of my life anymore. And I wonder if any of that processing – if that can go quicker if you just accept it right away. But maybe that’s just ways that I try to find to, like, beat myself up. Of like, girl, don’t fight it, this is your situation, just deal with it. *laughs* But I spent so much time trying to like – you have – there’s a whole period of time where you have to come to terms with it before you can even do it properly. [Juliette: I don’t know.] I think. I don’t know.
Juliette: How do you come to terms – like I don’t – I-I struggle with the same question, like, that question all the time. What does coming to terms with this mean and look like for me? There are some days I’m like, yeah, this is what I – this is my life. This is who I am. And there’s other days where I-I completely in my head, I forget that I even have an illness. And that I require medication. And then that’s when I fall flat on my face usually. But-but it’s like, I don’t know how to come to terms with it. I don’t-I don’t know if I want to come to terms with it.
Jodi-Ann: That’s the thing. I don’t wanna accept it.
Juliette: Yeah, I don’t want to always accept it because then it means that I have to let go of who I was before. And I loved her.
Jodi-Ann: Yeah, she was dope. *laughs* I didn’t know who you were before, but I was – before this – I was amazing. *laughs*
Juliette: I’m sure – I know you were amazing. And you still are – but it’s like in our heads we’re like no. That was, like – if I had known that that was gonna be, like, my peak…*both laugh* I think I would have done things a little differently.
Jodi-Ann: I would have enjoyed it more. I would have tried to find the husband during that time. *both laughing* ‘Cause now I’m like – okay so I’m curious for you, ‘cause you and I had different – kind of how our lives shifted after diagnosis – where I lost a lot of my friendships in Seattle. Like most of them. And so, the people that I know now – and this was like two years ago for me – I have almost nobody in my life right now who knew me before my surgery. Almost no one. So most people I know, know the “after surgery Jodi-Ann”. Which mentally freed me to try to get out of the comparisons, even though I’m still in it, but at least I don’t have to look at other people who are making that comparison. And so, this impacted my social world more than my professional life. Professionally, like my whole office showed the hell up for me. Like, I had such a positive work experience. And I had a really, really negative social experience.
Juliette: You know, it’s just so sad. That-that breaks my heart that people who in your social life, who call friends, who position themselves as friends in your life – didn’t come through for you. That hurts me. A lot. Know that.
Jodi-Ann: I think that is what kind of triggered a depression that made me feel – real talk – like very suicidal for a long time. Because I felt like a pariah. I felt like I survived my surgery for nothing because people…couldn’t love me. *voice faltering* Couldn’t love somebody who needed so much. And it’s hard when you’re like, “strong Black woman” and you’re, like, the strong one who shows up in your relationships and – “oh, the strong person needs something?”
Juliette: As much as you thought they were your friends, they clearly weren’t and it-it took that to see it and, make room for more meaningful relationships. That will carry you through this next phase of your life.
Jodi-Ann: Yeah. I appreciate that. And that is also the work, right? Of needing to “come to terms” and like, what does that look like? And what does rebuilding – one, for me at least – coming to terms with the fact that I need a social circle? ‘cause for a long time, I was like, fuck it. Ima just be out here. And I will say, Juliette, like, when you and I first connected – and I want to talk about how I learned about your thyroid cancer – that actually turned on for me that I can create new relationships. [Juliette: Mmm.] You trusting me with what happened to you, and like, opening that up made me feel like, oh, okay, I can make friends again. And so, I want to talk about, like, what happened – look at you crying! [Juliette: muffled cry] You gotta stop! *laughing* Look-look at us on the Zoom with these Kleenex’s like – *laughs* [Juliette: No more, Jodi-Ann.]
Here’s what I, here’s what I want to confront you on, on this podcast.
Juliette: Do it.
Jodi-Ann: Okay. I was suffering. And then the other side of me was very public. I had a platform. I was talking about my own cancer experience, integrating it with race, you know, being, like, very vocal about the intersectionalities of race and disability and gender and my story, right? And you watched me. And it took – what – a year of us knowing each other? That you sat and you were like, “Girl, I had thyroid cancer.” Yeah, I think you – I think you said, “You and I have more in common than you think.”
Juliette: I did say that. Yeah. I did say that. Can I tell you – while I was in the audience watching you talk about this, I was-I was sitting there stunned. Stunned by you. Um, and, what you didn’t see was my own tears in that moment while I was sitting in the audience. *starts crying* ‘Cause I was in awe of you. I’ve been courageous in so many other areas of my life. Like, I have done things that people, like, label-had labeled me as being crazy to doing, you know? Heck, you know, I-I try to live my life in this fearless way. And it’s been a mantra for myself for years now: being courageous, being fearless, facing everything. And for years, I didn’t talk about my diagnosis openly. I had a really ugly experience in the workplace when I shared what I was going through. My workplace was not as warm as yours. It was actually very toxic and created a lot of trauma for me. I was struggling a lot. I learned to just bury it all. Like, you look normal so act normal. [Jodi-Ann: Mmm.] Don’t talk about it – just be. You know, nobody has to know what happens in your – in your apartment when you’re alone, you know? And how you – how you feeling. And I will never tell like – I’ll excuse myself from situations and just say, “Hey, I got something I gotta do.” Or whatever – you know not – I never say, “Hey, listen, I’m having a flare up I really need to go home and just rest a little bit.” Or something. You know? I don’t – I didn’t – I never said that.
But watching you on that stage. I said, oh shit. [Jodi-Ann: Dayum.] She is powerful. And I know you didn’t necessarily feel that way, but you radiated in a way that touched me, but also scared me. [Jodi-Ann: Mmm.] I wasn’t in place. I didn’t know how to have that conversation. I didn’t know. And like, it goes back to, like, even though you have this experience – like this is your life – my mindset is don’t talk about it because people don’t understand. Don’t talk about, you know, like, don’t be that thing. Don’t be the person with cancer. But you struck me. I got emotional in that. And I was so proud of you. And I actually felt like shit, to tell you the truth. *laughs* I was like, oh man, like, I don’t know how to do this. I don’t, like, how do I? How do I do that? Like, how does she do it? How did she find her voice? And I-and I couldn’t and I couldn’t answer it. Like I didn’t know how you found your voice. I didn’t know how to find my own voice in this. And it took that long. It took that long. And I wanted to – I think even in between all of that – I still extended myself in a way. Like okay you’re a friend, you’re not alone. But I never shared my own. [Jodi-Ann: Yeah.] And I appreciate you kicking my ass for that later. *laguhs* Because I needed it.
And-and I forget what actually transpired that actually made me share that with you. I don’t know. I don’t know what triggered it. I think I just felt – I probably was in just a place of okay, I know her. I like her. We need each other. And this is stupid, Juliette. Like, we need each other here. Like I need her and I know she needs someone too. You know? And hell, I’m in diversity, equity and inclusion. [Jodi-Ann: Yes. *laughs*] Like, how disingenuous is that? And lack of integrity. And so that was all still playing around in my head because I never even talked about that as part of my identity. [Jodi-Ann: Mmm.] So…I was just committing to myself to do better. And to be better. And to be courageous in this space. To find that next thing that brought me here and facing it. And so I’m so thankful for you for being that person at that time. And now, to pull me, like, help me through that. Um, and you helped me a lot more than you even realize. I mean, girl, like for the first time I actually shared with my job that, um, I have a chronic illness and identify this person with a non-visible disability. Like I put that out there.
Jodi-Ann: Was, like, in the world!! *laughs*
Juliette: Um, that’s scary.
Jodi-Ann: How did that go?
Juliette: Nobody said anything. *laughs* Like –
Jodi-Ann: Girl, we all got chronic illnesses. *laughs*
Juliette: Nobody said anything at all. It was like, it just passed. I think I made a joke about, okay, now I could check off three of your diversity boxes. *laughs* [Jodi-Ann: Yep. *laughs*] Black, woman, person with a disability. So, um, but that was a lot. That was, like, a big deal. I wrote it, I erased it, I wrote it, I erased it. And I finally left it, like I’m gonna commit to it.. And I committed myself to doing better. And so you-you’ve taught me that. So, thank you. [Jodi-Ann: laughs] I actually feel a lot better once I announced – like \when I started to talk about it at work. Like oh, this feels better. Like I’m not hiding something all the time. But yeah, that’s I-I don’t know if there’s a better answer to why I didn’t connect with you on this for nearly a year. And I feel bad because I know now how much you were going through. And I’m, like, I’m sorry that [Jodi-Ann: laughs] I didn’t see it. I didn’t know how to do it. And it was like – I was in my own self-preservation mode. And that’s what I felt like. It’s like – just trained self preservation mode, all the time.
Jodi-Ann: But it’s interesting because after you told me what happened to you – and I want to, I’d love to get the details on the record of that – I got it. I totally got it. It’s not like I’m holding it against you. But it was also important for me to chat with you about…’cause I just kept thinking of, what could this last year have looked like if you had Juliette? Because I see myself in you so much. Caribbean girl from New York City, out here in Seattle, on our own, [Juliette: On our own.] single, suffering through a sea of whiteness, doing Diversity, Equity and Inclusion work, [Juliette: Yep.] having had this experience, having had an invisible disability, trying to navigate the fact that you know that your body can create cancer…and I – and then at least socially because I felt like such a pariah. I was like, nobody – then you get all, like, absolutist – nobody’s going through this. It’s just me. Ahhhh. And I was like, no – this person…you were a personal trainer, I was also a personal trainer, like,
Juliette: What! We have that in common. We have soo much [Jodi-Ann: We have so much in common. *laughs*] in common. Parallels of each other. Oh my God.
Jodi-Ann: And I was like, shit, it’s someone, someone else, not just someone else but someone who’s like, ticking all these boxes of-of similar life experiences. And I just like, oh my god, that was lost time. But I was probably also in a place of resisting that ‘cause like when we met I was, and there were times that you have reached out to me, and I was feeling so worthless that I was like, why does she want to spend time with me? Everyone that I know, I just know professionally, nobody wants to spend time with me because I need too much. And then if people do want to spend time with me, it’s ‘cause they’re trying to leverage something from me professionally. And so when you would reach out to just kind of kick it, I was like, I don’t know what she wants. And I feel resistant and like wanting to spend time with people. And, it was hard for me to even be fully present in a friendship or, or whatever was going on with you because I just felt so – isolated. And then the only place that I could be myself was in this professional relm, ‘cause in my experience, that was the safe space.
Juliette: And that’s the one place that we-we had space.
Jodi-Ann: Yes. And so can you tell-tell folks what happened to you when you were going back to work?
Juliette: When I got cleared to go back to work, I actually had begged my doctor as well and I wasn’t ready and I kept trying to extend it because I wasn’t feeling great at all like, and-and saying I wasn’t feeling great is an understatement, I thought I was dying. *voice breaking* I literally thought I was dying. I would, like, things go through my head like oh, I’m gonna create my will. Like if I die now, what would they find in my apartment that would be embarrassing? *laughs* [Jodi-Ann: Yup *chuckles*] Let me let me get rid of those things you know like um, so my head is like you know, but this is how I honestly felt like I wasn’t gonna going to live, um, but I had to go back to work because I had to pay for that apartment that I’m feeling like I’m about to like this gonna be my-my last moment my in this apartment so I have to pay for this place. Where else am I going to suffer?
So, went back to work, and this is a job that required, like, high demanding type of role. You know, you’re always on, people are always looking for you, putting in a lot of hours, it’s a lot of attention to detail too. And I remember sitting at my desk, there’s one moment one day where I was on a call and the conversation turned to me and I couldn’t speak. Like I started stuttering and I stuttered so bad like I thought I was having a stroke and I just couldn’t get anything out. I…my brain wasn’t working. I was so tired. I was crying at my desk and there is, no – I wasn’t functioning anymore. I couldn’t think and I was just standing there, sitting there just looking at my computer looking at all these papers and it was just all blurry all blur. And I thought oh god, I don’t know how I’m gonna do this.
And, and when I came – when I had came back in, nobody really asked me how I was doing. I came back, I was always wearing scarves around my neck because I still had my scar was healing. And I didn’t want to just walk around, you know, with this patch on my neck. Instead when somebody told me, like, in a really like ugly tone was, “Why do you keep wearing these scarves around your neck?” And I’m like, “Well, you know, I was out. I had surgery – I, you know, I was sick, I was out sick”, and that person didn’t respond to me. They didn’t say anything. And they just kind of walked away. And I went into my manager’s office, like I got called into my manager’s office for something, and she said, I was ready at work trying to get through this pile, this pile of work is things that I needed to do. And she said, “Hey, I need you to take this project on”. And I said, “No, I can’t. I’m sorry, but I can’t do it. I already have these-these things that I’m working on. I’m still recovering. I can’t take on this next project”. And her face changed, she got upset. She’s like, “What do you mean?” Like I just got I literally just got out of the hospital, um, just got cleared, I have to pace myself in my recovery. I can’t put in 60 hours a week, you know, to do this. And she ended up writing an email to our, like higher up and to the rest of the management team about what I said.
And that spiraled after that, because next thing I know, I was being asked to provide my medical records. They called in the office psychologist, [Jodi-Ann: Oh my god.] to assess me, and I refused to talk to her. I was like, this is a trap. [Jodi-Ann: Yup. *chuckles*]. And they kept telling me, and so whatever, they kept handing me papers to give to my doctor to fill out and I must have given my doctor so, I it-it was so much that my doctor got fed up and said she will not write one more. She won’t do it anymore. She’s like ‘cause it’s like by the 10th request is like what else do you want? Like I’m telling you what her condition is and saying that she needs to, to ease back into her work. And it was over and over and over again. And then I sat down and then we had another meeting where with my manager, she’s like, “Well, how do you know your doctor?”
Jodi-Ann: Whoa, ‘kay.
Juliette: Then it went into, “Can I-can you give me your doctor’s information, I’d like to talk to her”. [Jodi-Ann exhales] And they wanted to set up a meeting with my doctor. I was like, that’s a clear violation, like clear violation. And so this went on for a while. Every time, walking into that space like, they were making me out to be a liar, like, Oh, she must be faking it. She’s not up to doing the job, or etc, etc. You know. So this is like what was percolating the undercurrent that was percolating about me…. It hurt a lot. [Jodi-Ann: I’m so disgusted.] It hurt a lot. And it went back. It was just and you know, you walk into meetings, like, ugh, let me guess you’re not going to do it. Are you? You’re not – [Jodi-Ann: Jesus.] Oh, you know, you can’t stay an extra hour? No, oh, of course not. Right. Um, or another coworker saying to me, it’s, it’s so hard to like even recall all of these things. But, you know, my coworker turning to me one day and saying, “Well, you’re fine now, aren’t you? So I don’t understand what the problem is. Like. That happened like three months ago. But you’re fine.”
So, and then when summer finally hit and I was still wearing the scarf and, that was a whole other level *laughs* that was like, oh there’s like what did they like? having to explain why I’m wearing the scarf, you know, and why are you even asking, like what is your business if I want to wear a scarf during the summer let me wear my scarf during summer. *laughs*
Jodi-Ann: Why is this bothering you so much? *laughs*
Juliette: Right! But it got to a point where it felt – it was hostile. [Jodi-Ann: Yeah.] It was, and as devastating as I’m trying to figure out like I’m, I’m feeling – I wake up every morning, feeling like death is upon me. [Jodi-Ann: Yeah.] And I have to find a way to get into the office and try to look pleasant because you know, hey, a Black woman in the office who’s not smiling is, [Jodi-Ann: Oh, okay.] a whole nother you know, issue. Like, Oh, she angry, she has an attitude problem. And somebody actually did say that, that I had an attitude problem. And so trying to navigate that negativity and toxicity and hostility while also trying to reconcile what just, the trauma that I just physically had – and then I’m still trying to survive from? My doctor finally said to me, she’s like, “You’re not getting better”. I wasn’t healing, and that’s why I took, I kept this scarf on. I was not actually healing. And she’s like, “You’re under too much stress. You are not going to heal, you’re not going to get better. We keep putting you in all these different medications and nothing’s happening. The stress is what’s the problem here.” I realize, Holy shit. I’m not going to survive. Like, this job is trying to kill me. [Jodi-Ann: Yep.] And, I woke up one morning, it’s like I heard a pin drop, and I had this utter clarity, beautiful clarity. Like I’ve never experienced a moment like that before since then. But it was like, everything slowed down, the light was shining through my window. And I could see like the little dust particles and everything was in slow motion. It’s beautiful, slow motion, it was quiet. And I was so much at peace. And it’s like I heard this voice that said, you know, you know what to do. This isn’t that hard. You’re making it harder than it is. You know what to do. I walked into the office that morning, and I handed my resignation – and I’m done.
I gave them two weeks notice, nothing more. And I didn’t have a new job lined up. I don’t know what the hell I was gonna do. All I knew was that this could not be it. Because it was killing me. And, they were shocked, they were like, “What?” I did – you know, like, how dare you? Like how dare I? [Jodi-Ann: Yeah.] quit. You know, like, no, we’re here to make you suffer Juliette, don’t go quitting on us.
Jodi-Ann: I had plans for you today. *Both laugh*
Juliette: You know, they, um, and so, and so that’s what happened, I quit. And it was the best decision I made for myself to this day. And if I didn’t listen to that intuition, I don’t know what would have happened to me I would have suffered even more. I even thought about bringing a lawsuit against them, please, you know, like that idea of just asking me for my doctor to talk to my doctor and all of this. It was just a shitty time, shitty time. And so, I walked away with that like professionally, I cannot [Jodi-Ann: Yeah.] negate this conversation, they will not understand. And so, in my professional space that was void of my identity. And, in my social space more people knew about what was going on with me. But even then that was an uncomfortable space for me to be in. It-it always is. So that’s, that’s where we kind of had a– that’s where we differed. [Jodi-Ann: Yeah.] My professional space was just like it was ugly. It was ugly.
Jodi-Ann: Yeah. And it was, it’s not until recently when I started to expand my own DEI [diversity, equity and inclusion] practice around disability rights as well. Where I started learning more about accommodation hostility, and how accommodation hostility even shows up in the workplace. And what I love about your story is the fact that you’re like, I’m not doing this anymore, and had nothing lined up and I’m like, Girl, you can’t be unemployed you need health insurance like that’s that’s why we’re in this situation in the first place, how you gon and get the medication like… *laughs*
Juliette: *laughs* it was after I left the building that I realized I had an OH SHIT moment. I was like ooh…
Jodi-Ann: How you gonna get them pills girl? *laughs* That – like that is, I think when you trust yourself and you have to know like no more you hold the line I’m not doing this and [Juliette: Well..] you figure it out.
Juliette: You know what Jodi-Ann, it’s like yeah, health insurance, I realized like I had an oh crap moment like oh my god, I need health insurance. But even beyond that it was, there was a much higher voice and thing happening. [Jodi-Ann: Yeah.] That was so much bigger than me. Like my-my pure survival instinct kicked in. And, I bet on myself. That’s when I learned to start betting on myself. Like, Hey, you need to survive, this is what you have to do. Guess what? You’re smart. You’re educated. You had a great- you have a great job. You’re no, no one’s god damn fool. [Jodi-Ann: Nope]. You’ll be fine. You’ll be okay. Like we’re gonna make, we’re gonna figure this out somewhere another.
Jodi-Ann: Yeah. I think what that switch for me happened really, really early in my rehabilitation process. I literally was like running through the hallways of Sloan Kettering in my little Patagonia onesie.
Juliette: Oh that’s another thing we have in common, Sloan Kettering.
Jodi-Ann: Yes! Yes. Yo, shout out to Sloan [Memorial Sloan Kettering Cancer Center]. I love that place and their cafeteria is dope. *Both laugh* [Juliette: *laughs* It is! That’s true.] Yo, I like I still go. I’m like, Yo, i’m going to the cafeteria today. *laughs* Like. I’ve never been excited by hospital food. When they moved me too Presbyterian across the street. When my family would come visit me, I’d say, “Can you get me XYZ at Sloan’’s cafeteria?”. I would get the cap – Like before I would even ask my parents to bring me home cooked food. I said, “Can you go and bring me food from Sloan Kettering”? *Both laugh* And I knew they’re on point. And this is how I knew like this is why I had to do my surgery in New York and not in Seattle. They have cornmeal porridge for breakfast. Bro, you got my cultural food in the cafeteria?! Yes! And it wouldn’t be on the menu for patients. But I knew that cornmeal porridge, [Juliette laughs] I knew it was in the cafeteria. So when I would call for breakfast, I was like, Yo, I need you to send me up. [Juliette: You got that secret menu.] Yes. I was like, I need you to send me up some cornmeal porridge.
Juliette: Leave it to you to find the secret menu. You know what, you were bold. You’re bold now, you were bold then *laughs*.
Jodi-Ann: Like okay, so this – Okay, back to my point. This is what happened for me. Three weeks before my surgery, I was snowboarding in the Alps. Fast forward, I wake up from surgery a couple days after surgery. The catheter comes out, you know, they expect you to move around and walk and stuff and they put me at the bottom of a staircase. And I’m like, Yo, I’m at Memorial Sloan Kettering, and you have me in a stairwell, I’m supposed to be on some, like fancy equipment, you know, like, this is what I’m thinking my rehabilitation process is going to be.
Juliette: Right, this feels too basic.
Jodi-Ann: Yeah! And I’m like, Yo, you took me to this stairwell with no windows like, it’s not even designed, right. It’s like the back stairwell that like nobody’s supposed to use. And she’s like, “Yeah, just walk up the stairs.” and I was like, ugh, and I put my hand on the railing and I just stood there. I literally could not walk upstairs. Because my brain is like cool stairs. We do this all the time. And my body is not getting the signal. And I stood there and I cried. *laughs* Of course. And like it took me a couple days to like walk up the stairs. And even in me walking was not was not a normal way of like, walking, like where you switch feet. *chuckles* You know, I was still doing like, like the way little kids walk upstairs we like 1-1, 1-1, 1-1, that’s how I was getting up the stairs like I couldn’t just like, [Juliette: like bring both feet up, yeah.] yeah, yeah. And so, I was in this mode of like, I’m tired of overcoming. I’m tired of having to swallow pain and just get it done. I’m tired of ignoring what is physically happening because I’m supposed to do this task. I’m tired of it.
And it’s layered with this like, being a Black woman, needing to be strong, needing to just kind of suffer in silence while you bring yourself up, bring your family up, bring your community up, bring like the whole race, race up all the ancestors up. I was like, I’m done. [Juliette: Yeah.] I’m not gonna swallow this, right because the stress of swallowing it is what kind of what you are experiencing like, that creates stress in your body, which is not going to help me. That psychological, emotional, mental stress also has a physiological manifestation. [Juliette: Begins to weigh at you.] exactly, [Juliette: creates other illnesses] exactly. And I was like, I’m not swallowing this. So from the very beginning, even though I was deeply, deeply suffering to a suicidal depression, I was like, I’m telling everybody, and that was just kind of like my way of kind of trying to dispel this strong Black, Superwoman myth. [Juliette: Mmm. Mmhmm.] But at the same time, I was still performing it. Because you saw me as radiating this thing, even though after I left, I think, I went home and cried. *chuckles*
Juliette: I think there’s always going to be a degree of performance. I-I wonder, I think, because we both become so good at performing.
Jodi-Ann: Yeah. And that scares me.
Juliette: Exactly. Exactly.
Jodi-Ann: That you can’t see it
Juliette: Well it becomes cyclical. [Jodi-Ann: Yes.] Like we said, we-we’re starting. That’s a tough one. It’s like, I almost feel like you’re damned if you do damned if you don’t. [Jodi-Ann: Yeah] Yeah. [Jodi-Ann: I don’t know.] You put yourself and your health first by owning it and not burying it far sooner than I was ever, obviously ever able to do it. And the impact of that was detrimental too for me in other ways. And so I listened to you, I’m like, Wow, like I- and that’s why I say you’re, you’re you have this beautiful, authentic courage. Your survival instinct kicked in way before mine did, *chuckles* you know? And it’s like, Okay, what is it? Like, you know, for me, I just, I was like, No, I need to pretend I need to, you know…
Jodi-Ann: But that’s also your survival instinct.
Juliette: It’s a different kind of survival.
Jodi-Ann: That’s how you survived it. And I think that’s what is so interesting, like when you actually get to spend time and talk to people about their stories. And what inspired me to even think about this podcast is, people are surviving in different ways. And I’ve spent too much time trying to think, Could I have done these past two and a half years differently? Did I survive wrong? *chuckles*
Juliette: And isn’t that a weird thing to say? Is there a right way to survive? [Jodi-Ann: *chuckles* Yes.] Um, other than just to survive, right? I don’t know. There isn’t a right way to survive. I think we do, again, the best with what we know to do in that space and time that we’re experiencing it. You know, [Jodi-Ann: Yeah.] and when you feel and know something different than we do different, and that’s what I meant, you showed me something different, because before you I’ve never met anybody else who, a Black woman, in a professional space I can honestly say I have never met a Black woman in professional space who, had a disability or a chronic-ill, you know who was going through this type of event in their life and was open about it. I-I can’t think of one. And, and that’s what I mean like when you when you when I saw you it triggered something for me like, Oh, maybe it is possible, but how do I do it? And I had to navigate myself through all of this stuff, but never mind all the other stuff that was happening in my life, you know. But yeah, that workplace situation was just – toxicity is an understatement. And, and it’s like how could people be so cold?
That’s what I can understand. Like, how could people be so goddamn cold and mean? Like, I-I was walking-walking into a mean girl situation like everyday for like over a year after my surgery. The amount of effort it took for me to get into that office was astronomical at times. Like my boyfriend at the time would carry my-my bag for me, we would take the train into the office, and I didn’t even have the strength to carry my bag. And where we lived, we had to go up the stairs to get in to the, to the train, to the seven. And, I remember, and when you talked about the stairs story, it triggered for me also because I won’t ever forget one day standing in front of that stairwell at that stair stop, put my hand on the railing – and I bawled because I couldn’t get up the stairs. Not that like, I couldn’t physically – I didn’t have enough energy to even get up the goddamn stairs and it took forever. It felt like forever. And bless his heart [Jodi-Ann *chuckles*] he was incredibly patient with me. But can you imagine we would have gotten to a point in our lives where stairs? It was like, it’s like a big challenge for you know?
Jodi-Ann: I wasn’t expecting that until like maybe my 80s or something, you know? *laughs*
Juliette: right I and-and so-so what I’ve learned now, I don’t know if you do this as well but um, I know I’ve come across like if I’m going up stairs or going down stairs and there’s like an elderly person or somebody in front of me is going super slow. I secretly cheer them on and try to give them like some encouragement *chuckles*. And like I understand like I have a whole new level of understanding and appreciation I’m like, okay, yes, yes Mommy, you can do it. You can do it. You got to take your time. Take your time.
Jodi-Ann: walk one at a time girl you got this *laughs*
Juliette: Or OR, I’ll-I’ll actually slow down enough behind them to keep people away. I’ve done that. You know, I mean like, just just keep that pace because people get frustrated. So if this person ahead of me and me are going slow, then that slows everybody else down. You just gonna have to deal with it, you know? [Jodi-Ann: Yeah]. But it’s a it’s a shift in, yeah, it’s a shift, but I can’t believe how mean people can be [Jodi-Ann: Yeah] and that’s I got away from it. Yeah, the work situation was just, I was a number. I wasn’t even a person. I was just a body to do stuff. You know? Yeah. Just to have that experience like nobody asking how you’re feeling. What do you need? I never got that. Never got that. [Jodi-Ann: Yeah.] Yeah.
Jodi-Ann: So how are you feeling now? I know you started a new job recently. You had your first like public professional disclosure around, you know, having chronic illness. How are you approaching work, having had that trauma and trying to come to terms with different ways of being.
Juliette: It’s a it’s a it’s a battle because you and I, we-we we’re in roles that require us to be like, on point at all times, you know, there’s-there’s not a whole lot of leeway in the types of conversations that we have and the types of content that we’re leading. We’re forever challenged in different ways. *both laugh*
Right? [Jodi-Ann: Mhmm] And so, but what I, what I started to do was one, give myself permission to take a break. And so I literally schedule it in. It’s on my calendar. And so I’ll block the first part of like the first half hour, two hour of my day, this is where it’s just me going through emails I’m not engaged is like is this a low build up into my into my day. And somewhere during the day I’ll take at least half an hour to just literally just do this. *laughs*
Jodi-Ann: Just lay back, put your head back. *laughs*
Juliette: Do this, yeah. And I need that, I absolutely need that. It’s very easy, and uh, and it’s very easy in the pace of work that-that I’m in to just keep going. I might feel proud of at the end of the day that I managed to go through it, but I know I’m going to pay for it somewhere else. And so therefore, I have to take that half an hour break at minimum just to close my eyes and give myself permission to do that.
And especially now in our virtual environment. We work more hours [Jodi-Ann: Yeah.] and meetings become more like, we’re back to back more, we start earlier, we end later. So that break is far more critical to invest in than it has been before. [Jodi-Ann: Yeah.] That’s-that’s the way I manage it and at-at this point.
And then I-I gauge myself, like I said, like in the morning I think about, Okay, what what are the things that I need to, you know, be forgiving of myself of if I were to push this back another day or reprioritize my day in a different way, you know? So we just have to be, I just have to be flexible with the way I see-see my days going.
Jodi-Ann: Yeah. So what advice would you give to someone who’s trying to consider how or whether to disclose at work? Right. So, a quick, things, like I had my, I had a really incredibly positive work experience around my process, and disclosure and coming back. Like when I found out about my diagnosis, probably the third call that I made was to the president of my organization. She talked to me for like 45 minutes, and I did not go back to work from that conversation, for four months. *chuckles* They’re just like, “We’ll figure it out, do what you have to do.”
But, interestingly, five days after I got diagnosed, I started an interview process with Amazon. And like, I found out five days later that I’m meeting with the hiring manager for coffee. And it was probably the first and only hour that I had in that time where I didn’t talk about my cancer stuff. And I cried the entire way to the coffee shop, and I cried the entire way home. When I got the call that I didn’t get the job at Amazon, I was sitting in a wheelchair, hooked up to a catheter in my hospital room. [Juliette: Oh my gosh.]
And I cried and I was like, I also have other things to do today, so it’s okay. *chuckles* you know? *chuckles* And then fast forward because I like had to – even though my work situation was so great – I couldn’t um, I couldn’t be in my life anymore. And so I sat with myself and I said, Okay, here are your options: exit life or exit this life. [Juliette: Mmmm]
Meaning, [Juliette: MmHmm] get a new, get a new job. Just be in different spaces. I got a dog, like I just created a different version of my life and I was like, I’m gonna try this for a year and if this doesn’t go out well, then I’ll just, you know, take the other option. Like that’s literally was my agreement with myself. I’m just going to try this new life for a year.
And then I interviewed at Zillow. And I spent the entire evening before – mind you, it’s for like, a diversity and inclusion role – And so like you said, like, I’m a Black woman with a disability like, I should proudly go in there with my cane and be like, Yo, I’m checking boxes for you.
And, then I know how people treat folks who have disabilities. And what is that snap judgment that you make? ‘Cause there’s also this like, bias towards just ‘cause someone has a physical disability then they’re not intelligent. [Juliette: Mmmm] Right? [Juliette: MmHmm]
So I’m trying to mitigate disability bias, I’m trying to mitigate bias against Black people, natural hair, da-da-da. So I spent the whole time trying to find clothes. I bought new shoes, because I didn’t know what they would do with me that day, and I didn’t want to use a cane. So I didn’t bring my cane, which I needed. And I didn’t want to show that I limped. And so instead of preparing my actual content, I was trying to figure out how to perform ableness.
Juliette: Wow, performing ableness.
Jodi-Ann: *laughs* And I was like, Yo, I’m struggling. I was like, please don’t let them say, “Do you want a campus tour?”, because I do not. *chuckles* Right?
And so, like, I was really struggling with like, how to navigate, like, leave my cocoon of this like, perfect work experience that I had, trying to branch out into a different world, and how to fit disability in that. And then ultimately, the job that I did get, I was like, I don’t give a fuck. I brought that cane. I was in that meeting. I was like, “Listen, I had cancer.” [Juliette: Oooo] They asked me how I managed, um, stress, and I was like, “So I thought I was gonna die last year. There’s [Juliette: Right?] nothing that would happen in this job, that would be more stressful than that.” *laughs*
Juliette: Oh my god! It changes perspective on everything and [Jodi-Ann: Yeah. *laughs*] the stress, it’s so true, like it’s stress, what it, like you reached a whole ‘nother [Jodi-Ann: still laughing] level of like, you think you’re gonna die. [Jodi-Ann: Yeah. *laughs*] Everything else is like, that’s not even an issue anymore. *laughs*
Jodi-Ann: Like, I said, “Nothing here would even register on the scale of stress.”
And so it was so interesting to go from like, how can I hide this? to, this is the only thing I’m going to talk about in this interview, right? I’m actually going to leverage my experience [Juliette: Yeah.] as a reason why you should hire me. And so I’m curious for you, like, because you had, you know, your own work engagement and professional, like traumas with this, and you’ve transitioned roles, you know, since then. You know, what advice would you give for someone listening, again, like, who’s trying to navigate work and cancer and all of that?
Juliette: Advice. Well, be-before I get into advice, I just want to, I-say that there-I had an experience in the workplace where I was on a team – I call them a really highly emotional team – [Jodi-Ann: MmHmm *chuckles*] Really, I’ve never worked in a place where everybody cried more than-than they did like for-Ugh. And here I come.
You know, one, I’m a New Yorker, two, I just survived cancer and feeling like I was gonna die. And so everything that was triggering for people in this team like-like really dramatic moments, I would literally sit there in a meeting. I’m like, like, no reaction coming out of me forever.
For an-I couldn’t do it. It was like, what? Why are you like, why is this so dramatic? Like, why are you crying? *laughs* It’s not that serious. [Jodi-Ann: Yeah. *laughs*]
Nothing was serious for me, um, or reach that level of emotional critical-ness. And I-I, I honestly told my team, I was like, I do not have the emotional capacity for all this stuff. [Jodi-Ann laughs] You know, like, this is not that serious, but it’s coming from a place of I-I like, I know what, there are things that I will cry over and this is so not it anymore.
Jodi-Ann: *laughs* So not it. And they just think you’re some angry Black woman, and you’re just like, No. I’m a survivor. I’ve been through actual stress. *laughs*
Juliette: *laughs* It’s so true. But it did come across that I didn’t want to be a part of this team, [Jodi-Ann: Yeah.] or that I was angry, um, I just didn’t-I just couldn’t relate to any of this stuff anymore. You know, like, I just, that’s another experience in there. But advice that I would give. Gosh, I-I think f-for me, like, given that this is probably one of the-the first times, uh, I’ve really just, I-guess, shared it with people … Own it. [Jodi-Ann: Mmmm]
I had to own it. And, and when I-when those words came up on the screen … I owned it, I leaned into it and said, “Okay, this is me.” And my voice didn’t quiver. It was just, “Hey, I identify as a person with an invisible disability. I have for the last eight years,” and I just kind of rolled into it an-and, and I-I didn’t qualify it with anything. It just is. So they didn’t-they didn’t, it didn’t leave any room for questions or um, curiosity or you know, or there wasn’t, it just is, there’s no debate, there’s no questions. This is who I am, period.
With my manager, it was with a tone of – not necessarily that like – I manage my illness. Like I’m not asking you to manage my illness, but I’m telling you, I have an illness and this is who I am. I’m owning it. – And, and she was, she was very, she was like, “Hey, you know, whatever you need,” An’ I said, “Okay. I-I promise to communicate with you, and to be transparent, and that I can commit to.” So yeah, owning it, um, communicating my needs when I need it. And not asking others to manage this illness for me in any way, that’s not, being clear about that.
But I would say like in my previous, previous experience – like with that horrible, toxic situation – um, I al-I often think about if there’s anything I could have done differently to make that situation go differently, and there isn’t. [Jodi-Ann: No girl.] It’s, sometimes it’s cultural to your organization and what they’re about, and how people are with each other. I do believe that if-because I was struggling with it myself that I also … Oh, there’s another piece of this.
So an email went out to the whole team. [Jodi-Ann: Uh huh.] That-that I didn’t ask to be sent out when I was coming back into the office, that totally took power away from me and being able to tell my story, where they said, “Well, Juliette is coming back from medical leave,” and-and, um, like, “Juliette is coming back from medical leave and she’s has a dis- like, uh,she’s-she says, she’s disabled, [Jodi-Ann: sighs] in a way, like has to, um, undergo a process of re-entering the…” so it just kind of-it was a tone that said, “Oh, poor Juliette is coming back in and you know, she’s gonna need some stuff from,” – you know, like it was just really patronizing. [Jodi-Ann: Yeah.] and I couldn’t own that story or how I wanted t-to say, to-to talk about my experience, if I even wanted to talk about it.
And so it took the power away from me and how I related to my-my teammates, and my managers. And so if there is any other, um, advice is, narrate your own story about this and own that. And I didn’t have an opportunity to-to fully express what was happening with me and in a way that other people could understand and hopeful-like, and I-maybe understanding is too much to ask for, but at least know that there is what was expected, what I expected of them and what they exp-and what, and how to manage expectations from-of me, as well. And how they were going to work with me if that makes sense. [Jodi-Ann: Yeah.]
So I guess that falls in line with communication, but just owning the narrative of that as well. I would also say it, you know, just being mindful of, like, the audience as well. People say and do shitty things that are often illegal.
Jodi-Ann: Yo, can you say that again!? Say that, again. *laughs*
Juliette: People do and say shitty things that are illegal. *laughs* Blatantly illegal! When we’re in our place of our own suffering, that-the thought of having to engage in that feels like it’s too heavy. [Jodi-Ann: Yeah.] But if it is at all possible, make note of it. Save your emails. Your recordings, keep track of what you can, because we have laws for a reason. [Jodi-Ann: sighs] And they apply to us too. [Jodi-Ann: Yes.]
We-we have every right to-to exercise our-our rights as people with disabilities, with chronic illness in the workplace. And so I-I didn’t know enough about that then. I knew in my heart like this is not right. But I did not have the-the capacity to-to follow through. Just be mindful of how your workplace is treating you and document as much as you can in that moment. So, people yeah, a lot of companies do put themselves at risk inadvertently.
Jodi-Ann: And almost on purpose too, ‘cause I think particularly as people of color, [Juliette: Yeah.] then taking on this other marginalized identity around disability and needing to advocate for the thing that you need again, I think sometimes people might take advantage of, “well maybe she doesn’t see herself in this way.” You know, like sometimes you’re so busy fighting racism that you forget that you need to, you’re also a protected class under your disability as well. [Juliette: Yeah.] And that you won’t leverage tools and systems. That you’ll just take abuse.
Juliette: They’ll bet, yeah, you’re absolutely right. They’re betting on that. [Jodi-Ann: Exactly.] They’re betting on that because usually it’s a big corporation or organization that has a hell of a lot of resources than you do and they know you want the insurance *laughs* [Jodi-Ann: Yes! You need the job.] *both laugh* And so that’s why they were shocked when I quit without having anything else because I think they were banking on the fact that I’m going to stick around ‘cause I need the darn insurance. [Jodi-Ann: That you need it.] Yeah. Talk about slavery.
Jodi-Ann: Hello. What a way to end. So I didn’t even welcome you to the podcast, but I will welcome you to Black Cancer. And I will thank you so much, Juliette, for having this conversation with me, for being so open and vulnerable, and with this and outside of this, just being such a partner and role model for me.
Juliette: Thank you, Jodi-Ann for having me. Thank you for being a role model for me and inviting me and pushing me out of my-my comfortable little pit that I was in too. [Jodi-Ann: Yeah.] So you reminded me how important it is to be connected with others and that we need each other, like, we can’t do this alone. And it’s important to not try to do it alone. And thank you.
Jodi-Ann: Yeah. Thanks. And so I want to end on like something fun for folks because this podcast is about cancer and it’s-it’s also about life. Who do you recommend who’s someone our listeners should know, something that our listeners should read and something that our listeners should listen to?
Juliette: You know, okay, to be honest, the first thing that comes to my mind, one thing that I wish somebody had told me … I wish somebody had reminded me or told me or shown me or expressed to me in some way that I, I am far stronger than I believe myself to be. And I want to – I know the word strong is kind of loaded for us as Black people and Black women specifically – um, but I want people to know that there’s a depth in us that when you think it’s-it’s… there’s just more, there’s just more.
I wish people would know that there’s just so much depth in who we are as-as humans. And what we think is our capacity is actually not always our capacity. There’s, there’s more [Jodi-Ann: Yeah.] for ourselves, not necessarily just for each other, but what we give ourselves. Know that you can bet on yourself. Trust yourself. Trust your intuition. Love yourself. Like, I wish I had known to do that earlier and sooner.
What should somebody read? Specifically for thyroid cancer patients: Stop the Thyroid Madness [Jodi-Ann: Mmm] was a great book. I almost walked around with it, with like,it was like it was like my Bible and I’m looking for it on my shelf here and I can’t find it.
Jodi-Ann: I see it, by Janie A. Bowthorpe
Juliette: Yes. [Jodi-Ann: Yeah.] Yeah, at the very least, it started a conversation or a learning journey for me in how to talk to my doctors, what to not accept from my doctors. And it was like a-a stepping stone for me to learn more about thyroid cancer, the thyroid, the body, etcetera, But how to do the research around thyroid related issues in general. So I highly recommend that if anybody’s facing thyroid cancer, but in-in that same vein, read whatever you can about your particular diagnosis.
And don’t just read what the doctors are-are, you know, out there reading. Read things that are authored by other patients, [Jodi-Ann: Yep.] Because often time like we’re discussing here, our experience is far different than what the doctors will ever tell you is happening. They don’t research this. They don’t understand what happens afterwards sometimes, and it’s only until you connect and start to read other publications from other patients will you start to understand how to manage your own care.
And in that same vein, connecting with Facebook groups as an example of that and reading some of the things that they-they post there helps give some perspective on-on how to manage and learn about your own-your own illness. [Jodi-Ann: Yeah.] or condition.
And so, to listen to, I do listen to a lot of music.
Jodi-Ann: MmHmm. What do-what was giving you joy? What’s giving you joy right now?
Juliette: I listen to a lot of what we call “misik rasin”. [Jodi-Ann: mmhmm]. I’m into Afrobeats and I’m into, you know, but anything that is – because music can also be meditative. [Jodi-Ann: Yeah.] – The purpose of the music is to reconnect with self in some way. Music and dance for me is a form of prayer. And I think the message behind that is find your form of prayer and meditation, to reconnect back with yourself in some way. And that’s just my modality, at times, is music. And all of that counts, all of it counts when we’re facing these, you know, really devastating situations. Yeah.
Jodi-Ann: Yeah. I appreciate you.
Juliette: I appreciate you. I wish I could give you a hug right now.
Jodi-Ann: I haven’t hugged anyone in six months. *laughs*
Juliette: Oh god. How-Ohhh! I-don’t even get me started on that
Jodi-Ann: I know! *laughs* Right, they’re creating a whole generation of psychopaths. *both laugh*
Jodi-Ann (as host): Black Cancer was created, produced and edited by me Jodi-Ann Burey. Thank you so much, Yejin Lee for sharing your story with us today. To make sure that this and other Black Cancer stories become center to how we talk about cancer, you can like, subscribe, rate and leave a review wherever you find your podcast.
Follow us online at https://blackcancer.co/ and on Instagram @_black_cancer.
Trauma comes with endless wisdom for ourselves and for those around us. Tell someone you know about Black Cancer.
[Music fades to snaps and drum beats]
Juliette: I will also say this, Jodi-Ann, include as a part of your mantra that you will be okay. I hope that you get to a place where you can say it and believe it or say it enough that you start to believe it. Just give it a try. Give it a try and see if it changes for you. Or a version of that, because I want you to be okay. I need for you to be okay. I need for you to believe that you will be okay ultimately.
Jodi-Ann: I-I hear you. I receive it. And it is something that I am actively working on. And I think part of this-this podcast project is-is that, it’s that for me and my own healing and I hope for other people to know that whatever okay looks like, for you, like, you can get there.
Juliette: Wait, I didn’t define okay. [Jodi-Ann: Yeah.] It’s just okay, whatever that means for you for that day and in that moment. [Jodi-Ann: Yeah.]
[End of recording]