The Menstruality Podcast - 83. Endometriosis, Courage and The Power of Telling Our Stories (Emma Bolden)

Episode Date: April 13, 2023

We’re having an important, needed, hard conversation today about endometriosis. Luckily we are guided by an amazing guest who seems to be able to bring lightness and humour to even the darkest topics, author Emma Bolden. So we invite you to laugh, and cry with us.Emma’s memoir, The Tiger and The Cage exploring her decades-long rollercoaster with endometriosis was recently featured by the brilliant production company, Shondaland who describe her as a “compelling voice” and her book as: “an outstretched hand inviting us to accompany her through the most intimate and important experiences of her life, and women’s collective experiences.”Together we explore:The mystery that is endometriosis - even though the condition been documented since ancient Greece, and 176 million people suffer with it worldwide, we still don’t know exactly what it is, what causes it, or have comprehensive ways to successfully treat it. Emma’s personal experience, and what gave her the strength to not only manage symptoms that impacted every area of her life, but also to navigate a medical system that is all too often dismissive, dehumanising and at times, abusive. What writing her taught Emma about herself, her Calling and her future, and the healing power of each of us sharing our own stories. ---Receive our free video training: Love Your Cycle, Discover the Power of Menstrual Cycle Awareness to Revolutionise Your Life - www.redschool.net/love---The Menstruality Podcast is hosted by Red School. We love hearing from you. To contact us, email [e-mail]---Social media:Red School: @redschool - https://www.instagram.com/red.schoolSophie Jane Hardy: @sophie.jane.hardy - https://www.instagram.com/sophie.jane.hardyEmma Bolden: @emmabold - https://www.instagram.com/emmabold/

Welcome to the Menstruality Podcast, where we share inspiring conversations about the power of menstrual cycle awareness and conscious menopause. This podcast is brought to you by Red School, where we're training the menstruality leaders of the future. I'm your host, Sophie Jane Hardy, and I'll be joined often by Red School's founders, Alexandra and Sharni, as well as an inspiring group of pioneers, activists, changemakers and creatives to explore how you can unashamedly claim the power of the menstrual cycle to activate your unique form of leadership for yourself, your community and the world. Hey, welcome back to the podcast. Thank you so much for joining me today. I laughed so much in this conversation, which is surprising because we're having a really

important, really needed, really hard conversation about endometriosis. Luckily we're guided by an amazing guest who seems to be able to bring lightness and humour even to the darkest and most difficult topics which is author Emma Bolden. So we invite you to come and laugh and perhaps cry with us. Emma's memoir The Tiger and the Cage tells the story of her decades-long roller coaster with endometriosis. She was recently featured by the brilliant production company Shondaland who describe her as a compelling voice and her book as an outstretched hand inviting us to accompany her through the most intimate and important experiences of her life and women's collective experiences. So together we talk about the mystery that is endometriosis. You know even though this condition has been documented since ancient Greece

and 176 million people suffer with it worldwide, we still don't know exactly what it is, what causes it or have comprehensive ways to successfully treat it. We look at Emma's personal journey with endometriosis and also threaded throughout the conversation is what writing her story taught Emma about herself and the healing power of each of us sharing our own welcome Emma to the podcast it's really really wonderful to have you here and I wanted to start by saying thank you for this real act of generosity of writing this book and sharing so many difficult and intimate and vulnerable details about your experience. And it was very personally, very stirring for me to read it because there were several intersecting points for me around a decade of chronic pain and reproductive health stuff.

And I just felt like I had a sister by my side. I felt really supported and especially by your realness and your honesty and the bits of humor that you managed to bring in there in such a like a challenging story it was amazing so thank you so much thank you for being here and thank you for writing this book oh thank you so much that's absolutely the best thing that anybody could ever say to me about the book so that that means that means a lot to me. So I really appreciate that. Yeah. Was that part of your motivation for writing it? Or what what inspired you to write the book? Yeah, that was that was absolutely part of it. I feel like I went through so much of this

experience alone. But I was really lucky because my mother also had endometriosis and tons of surgeries, and she was very open. So I always had somebody to talk to, but not everybody is that lucky. And I feel like a lot of the bad things that happened in the book, well, in my life, which is now this book, had to do with being afraid to speak up, to talk about my experience. And that led to silence in the doctor's office and being gaslit and just wanting to be a good patient. And I really wanted to write a book that I wanted to write the book that I needed so I wanted to write the book that could be there for other people in the way that I wished I had somebody be there for me yeah I really felt like you were there for me when I was reading it that's

exactly what it felt like I was like see someone does get it someone is there for me um they're big topics that you bring in the book you know you share details of the pain and all the different challenges you've experienced and also out there in the world there is massive stigma I'm not sure if you notice so much stigma and taboo around endometriosis around uteruses around reproductive health around periods all of it what was it that gave you the courage to say I'm going to go out there and write this book even in the face of all this stigma and taboo that's a really good question um I guess the thing is that partly I felt like if this happened to me and this was my story I don't want to say that I wanted I wanted to make something good out of the suffering but I I feel like that's that's a part of it It sounds kind of like a strange thing to say. But yeah, I do feel like that's part of it. I wanted to make something good come of what I had been through. And at a certain point, I just realized that I'd spent all of my life with this opp oppressive horrible silence a lot of my family members have no idea

that I have endometriosis that um I had a hysterectomy it's been really funny since the books come out because I've had people who I went to high school with especially who were like I had no idea that you were going through this and I guess it it also made me realize that I wasn't able to be authentically who I am until I was able to let this part of myself be public and um yeah I think that the the stigma against talking openly about menstruation about other problems that you have, especially like, you know, the whole sexual part of it. I just feel like that's doing so much harm. One thing I reacted to really viscerally this week was I read about menstruation until girls are in sixth grade.

And I was in, I was between fourth and fifth grade when I started my period. And I thought about like, yeah, cause I was already so shameful. And the school that I went went to I went to a Catholic school and we had assigned bathrooms so I was still going in a bathroom that didn't have trash cans in the stalls which means everybody in the bathroom knew that I was on my period so I used to like I just remember hiding in the bathroom stall and like since it was Catholic school saying Hail Mary's and nobody would come in. And then having to wait until the bathroom was empty and then sometimes getting in trouble when I got back to class because I'd been in the bathroom for so long. And that's just like a small example of just how, you know, it shouldn't be shameful. It's just something that your body does. If you have a uterus, chances are this is going to happen. So yeah, I just really kind of got to the point where I was

like, I'm trying not to curse. You can, I do all the time. I was just like, well, fuck it, you know, this is, this is such a damaging thing. And I, I was in a place in my life where I don't think I could have written this book if I was still in the classroom. But I once I got out of the classroom, I was in a place where I was just like, you know what, I'm gonna go for it. Let's do it. It's amazing that you did. And I just really want to recommend to anyone who's experiencing any kind of menstrual health problems to read this book it's such a resource I just want to stay with this I just don't want to make you blush here but I just want to stay with this like strength and courage that you have because you know as a person it's literally my

life is talking about menstrual cycles and menopause you know this is what we do at red school and you know we just encounter the stigma and the taboo all the time and we just we just keep on going and it just it moves me greatly when someone dares to be right at the forefront um just you know, breaking, breaking these barriers down. And you've endured huge amounts. So pain, chronic, intense pain, and all kinds of symptoms that came with that, the nausea, the fainting, the, it goes on. I'm curious about the strength that you hold or the strength that has held you through all of those experiences what this is a big question you might not be able to answer this but what what is fueling that for you where do you think this strength comes from

honestly probably my parents um both of my parents were just I mean I could not have asked I couldn't even imagine having better parents I'm sort of sort of joking up so but um yeah I feel like a lot of it comes from my parents there's I think that if you deal with with chronic, particularly this kind of chronic illness from when you're really, really young, it kind of, it creates, it's like a bell jar that's put down over your family. And, you know, the way that your parents react is going to be huge. There's one, I think it's in one scene in the book, but it's something that happened over and over when I was younger. I just remember I would throw up and pass out at the same time. So when I would have my periods, my mother would be holding, holding my hair back because I had a

whole mess of hair. My mother would be holding my hair back and my father would be holding me up because they didn't want me to aspirate or something like that. So I think that's one physical example. But they were just, both of them were so supportive and so understanding

and helped me in ways that I can't even articulate to to get through this both emotionally and physically I think of it a lot of it comes from them yeah I mean I feel so warmly about your parents from the book I just love them so much and then there's a moment that really stands out for me with your parents, which is how they both responded to your first period. Yes. Oh, gosh. And your mom was like, oh, you've got your period peanut. It's just so sweet the way she said it. And then the scene when your dad has driven all the way over and he bought a single carnation. And as soon as he sees you he bursts into

tears yes it's so sweet it's such a sweet moment yeah when we were both crying my mother's like y'all are ridiculous looking back now and having talked with my mother now uh that moment is it's so fraught when i think about it from her perspective because she you know she had endometriosis the only reason i exist is because she took a fertility drug for a diet and it just happened to help yeah that's the only reason why I'm here um and she just I remember watching her her journey towards her own hysterectomy and just how horrible it was so since pretty much everybody in my family has these problems, she knew what me starting my period could mean and most probably would mean, but she still wanted it to be a good experience for me.

So we went to food world and got out. I just remember I was with her when she got the cake and it, she's orders this cake and she's like, can you put congratulations on it? With a period at the end. Wanted to just like melt into the tile floor. But looking back, it was just, it was so nice of both of them to celebrate it,

especially when both of them knew, oh my God, this could could be the end of all the potential that we saw in her if it's as debilitating as it has been. So let's talk about endometriosis, because I'm aware that there are people listening who might not really know what it is, because there is still such a mystery around it like I don't know still if I have endometriosis or not after 10 years of chronic pain and four years of infertility it's like it's quite likely but no one ever no one's ever even suggested that I go for a test but I know often the tests can actually make things worse and yeah it's just so there is so much but I just wanted to bring some of the statistics in. So we're here in the UK, and one in 10 women of reproductive age in the UK suffer from endometriosis, 176 million people worldwide. And the prevalence of endometriosis

in women with infertility is as high as 50 percent could you sort of walk us through what endo is and yeah tell us a bit about it for people that don't know I'm gonna do my best um but I will it's difficult just because nobody knows um nobody really knows exactly what it is which is insane because there's documentation of it in ancient greek texts um let me find his name i actually have it down um baron carl von rokatansky um in 1860 he's the one who who named it well he didn't quite name it, but he discovered it quite gruesomely in a female corpse and wrote about it in his books. tissue that is similar to the endometrium that is found outside of the uterus um and i sort of hesitated to say that because it's it's really tricky i've been reading a lot about it lately where they've said that it's not they used to say when i started um going to doctors they said it was the lining of your

uterus growing outside that's what I've always been told yeah yeah and what I've noticed lately that a lot of the articles that I'm reading say that they're very like particular in saying that it's like that tissue which is really interesting um so it can grow, it grows outside and in the pelvis and you can have cysts that form from it because let me go back. Sorry, I forgot the most important part of that. The tissue that's outside of the uterus acts just like it does inside of the uterus. So it's affected by hormones. But the crazy thing about that is that a lot of the medicines that we use are birth control pills. I was put on a medication called Depo-Lupron, things that reduce the amount of estrogen in your body, but endometriosis can also be estrogen independent and it can grow even when your

estrogen is stripped, even when you've been through menopause. Um, I remember at one point, a doctor told me that, that the, they found that the lesions can actually create their own estrogen. Yeah. So it can do a lot of different things. Sometimes they're just like very, very small lesions. Like a lot of my photos, it looks like little dots on my pelvic wall from where it was. It's very difficult to find because it can be, the lesions can be pink. They can be clear. They can be black. They can be brown. They can be, the lesions can be pink. They can be clear. They can be black. They can be brown.

They can be all sorts of different colors. You can have deep endometriosis, which can get into the bowel. I had these things called, they called them peritoneal windows. They may call them something different now, because this is like back in the early 2000s where the endometriosis kind of like pulls a hole in your in your your lining of the peritoneum which is gross you can also have i had these things that back in the day they called chocolate milk cyst or my doctor called them chocolate milk cyst which is really ruins chocolate milk for you but they're basically these cysts that are uh filled with with blood and and and that kind of thing and endometriosis can grow pretty much anywhere. They've found it in people's brains.

Like it can grow pretty much anywhere. Yeah. I had a, I had a endometrioma, which is, which is kind of like a big, a growth of endometriosis on my appendix. Yeah. And I had one of them that burst. I have it now in surgical scars, which is kind of crazy. So, wow. So yeah, it's, it's crazy because nobody knows exactly what it is exactly where it comes

from. And nobody, nobody really knows where it came from. So they don't know how to cure it yes but it has been found for millennia like I think in the book it says and you just said four thousand years ago is the first mention so this isn't a new thing this has been going on for a very very very long time yeah it's been going on for a really really long time there are so many points in the book where you highlight the different biases that exist in the medical system and one of them comes up when you're just describing what endo is in the book and you talk about this theory of retrograde endometriosis menstruation sorry oh no it's like I'm premenstrual here so all of these words are like swimming around in my premenstrual brain the theory of retrograde menstruation and so they used to think maybe some of them still do, that the blood flows back up the fallopian tube and that's what's causing it.

But they know that 90% of people who menstruate experience retrograde menstruation, but only 6 to 10% of people get endometriosis. But they still think it causes endometriosis like you just start to pull out all of these sort of certainties that doctors you know throw at you and they're not certain at all no one knows what's going on yeah yeah nobody knows what's going on it's wild because I was just to prepare a little bit and refresh my memory for the this interview I was looking up things yesterday and everything I saw still mentioned retrograde menstruation it this is crazy and one of the things I think that's also interesting is that a lot of them also mentioned that it's possibly genetic which my doctors for some, were extremely resistant about,

even though I can point to my whole female family, and everybody has it, my mother has it, they were very resistant about it. But apparently now they're kind of coming around to the idea. I've read a couple of theories that it because endometriosis also makes you at risk um people who have endometriosis are are also very likely to have a whole host of other issues like ibs um fibromyalgia yeah oh yeah ibs is a whole other she's saying Emma's saying yes because I'm putting my hand up to these all of these things she's listening yeah yeah and IBS they still don't

understand what IBS is IBS is just a name for a bunch of symptoms that can't really be understood yet yeah yeah and it's oh my gosh and it's it's also difficult to treat, but they do a much better job. Yes, yes. Thank goodness. So I've read a couple of theories that it either affects the autoimmune system or it's an issue with the autoimmune system because people who have endometriosis are more likely to have Sjogren's syndrome and lupus which is interesting for me because my grandmother had Sjogren's and my aunt was recently diagnosed with lupus and they both have endometriosis so nobody really knows conclusively which is crazy yeah we can like fly to mars but we can't figure this one out exactly exactly nuclear fusion we're almost there but yeah that large hadron hadron collider is discovering all kinds of things about the universe but we can't figure out what's going on inside the pelvis

of people who menstruate yeah so your experience of endometriosis is definitely one of the fiercest and harshest I've, I've heard of. There are a couple of points in the book that I thought I could just bring in so that we can get, you know, share the extent of it. I'm going to read your words back to you if that's okay. Oh yeah you said and then I felt it that crushing crash somewhere in my abdomen the pain I described to the doctor when he gave me a list of adjectives to choose from as stabbing my body broke out in chills and then in fever and then I panicked I knew what came next the gray and the stars and their gathering and then the moment when I was not myself anymore when I became the gray and the stars and their gathering and then the moment when I was not myself anymore when I became

the gray and the stars and their gathering and when my body folded over and before I could put down the snow globe is that you're holding a snow globe I felt it blood too warm and too familiar and already too far down my legs and just for context that was in my Catholic schools parish hall during uh we had a event to buy Christmas presents for our parents I think I was in that one I was in sixth grade when that happened and yeah I had to run to the bathroom yes and there's this extra level isn't there because of the stigma you know if it was some other ailment, people might gather around and support you. But of course, because there's this hush, oh, no, no, there's this shame, there's this taboo around it. It's an extra layer that you've had to navigate systems when it comes to understanding and treating and healing and supporting people with endometriosis.

So the tilt test, just to set the scene is you're fainting a lot and no one knows why. And there's this test. Do you want to describe it? Yeah. Oh yeah. Um, yeah, I started passing out, um, not long after I, I had my first period. Um, and I would, I, it, I would pass out, especially during my periods. And nobody really knew why it was happening. So everybody, I got referred to a lot of child psychiatrists. But my mother and my father were, no, this is really something wrong. Like, I could, I could literally be like sitting at my desk and then I'm out, like just, just pass out and faint. And they were like, there's something really going on here. So my, my mother finally heard of a doctor at a university here who treated, he was one of the only doctors who treated something that at that time they called dysautonomia. There's all of these different kinds of like more specific diagnoses, one of which is POTS.

Polyorthostatic tachycardia syndrome, I think is POTS. But at the time, they just called it dysautonomia. And the definitive test was they would put you on what they call a tilt table and strap you down, or they strapped me down at least for very important reasons. And then see how far you can be tilted with your head up over your feet before you pass out. And for me, it was pretty much as soon as they turned on the machine, I started passing out. And so the nurse told my mother, like, I want to see something hold on to her knees so they just kind of like experimented on me for a little bit by turning on the table and um you know seeing how long it would take for me to just pass out completely yeah and how long it would take for me to come back. Yeah, yeah.

You're so much grace that you describe these things because these are really difficult, really, really difficult things that happen to you. And you bring this lightness with you. It's just so amazing. So, okay, so you're, so this is doctor number four, I think, because by this point you've got so many doctors.

And the first thing that really struck me and that you pull out of the story is just simply not being believed you know when we're experiencing pain I think so many people with endo get this you know as you said you were referred to child psychiatrists so you say in the book I started to cry I told myself to stop I told myself they're going to think you're dramatic they're going to think you're faking they're going to think you're a faker so suck it up and you bit the insides of your cheeks to stop you from crying and the reason I wanted to bring that in is because I know that so many of the people listening will know that place I know it it in myself, like, stop, like shut down because you're not going to

be believed anyway. And like, what does that do to us when we're so consistently not believed or not seen or not respected? So something shuts down in us. And I guess I just wanted to explore that with you and hear where you're at with that process. Oh, it's yeah, it's one of the most horrible things in the world. And I actually have like these these white I still have to bite my cheeks like that so often. And I think one of the reasons why I do kind of talk about it with lightness is because I use humor as a defense mechanism because it's you know I if I didn't laugh about it I would be a mess that would be an absolute mess it really um I think the thing that it does is it makes you doubt yourself in in really dangerous in ways that can be really dangerous for yourself. And it, it's really affected the way I deal with other medical issues. I don't want to go to, at this point, I don't want to go to doctors.

I will let things go way too long. And I'm just, anytime I have to talk to a doctor about pain or what I'm experiencing, it's, it's terrifying, particularly because now what I'm dealing with is, you know, I had a total hysterectomy in 2013. So 10 years ago, almost 10 years ago. And I have had cyclical bleeding ever since then, which is crazy because I don't have a uterus or ovaries or anything down there that could make, you know, that's supposed to make the bleeding. And because that surgery was kind of botched, it was impossible for me at first to get any, anybody to listen to me because they didn't want to cause trouble in the medical community because where I had that surgery was a very small,

very, very small community. And, um, it's been really challenging because I don't, it's probably the same the times and they just keep telling me that it's not actually happening like it very much is happening I you know I I feel like you know you can you you've told me that I've faked pain all of my life so I'm almost used to that in a horrible way but um you can't fake blood I just can't you can't fake blood so yeah so it's it's still it's still a challenge I think that one thing that writing the book and getting the book out there has helped me with is being braver and more willing to just say that's it I'm done walk out um I had an experience a while back this it was early fall where I have um I still have a lot of side effects from the Depo Lupron. And one of them is that my spinal column is kind of collapsing. So I have a bunch of, um, herniated discs in one of them.

Um, one of them got really bad and, um, pinched my nerves. So anyway, I went to, I went to a doctor for that. And he, after going through showing me which discs were herniated that my spinal arthritis had gotten worse that I have bone spurs after showing me all of these things on the x-rays he tells me that the real problem is because I couldn't have children. Oh my God. Yeah. And had a hysterectomy and that I'm not introspective enough to have worked through that. What would you say to someone who is,

has medical professionals blaming them for their own experience like that? What would you say to to our listeners who are who've had that experience no you don't don't let them do it um you know I that was the first time that because I said well I literally wrote a book about it so I feel like I'm okay on the introspective part like I feel like I'm done with that you know and i just i ended the appointment as quickly as i could and got out and um i actually tweeted about it so i actually shared the experience with other people which was helpful um i'd like to say you're not you're not the only person who's being gaslit. And if you think you're being gaslit, you are. Just because somebody has a medical degree doesn't mean that...

I don't want to say... I mean, because I don't feel like all doctors are bad, but I do feel like having a medical degree doesn't mean that that you're always right or that you always have every patient's best interest in mind and that you're always thinking about what's best for the patient and not what's easiest for you as well um there's so much shame that comes with it and i think that's the thing that i'd like to say the most is don't, this isn't your fault. It's not something that's wrong with you. It's something that's wrong with the system.

And it's something that's wrong with, you know, the person who's, who's sitting across from you. So don't, don't feel shame because it's not, it's not your fault. And whatever, you know, your body. So whatever's wrong with you is in the body. It's not just in your head. Emma's courage is stunning, isn't it? I want to take a moment to honor her and to also honor you if you are one of the people who is suffering with endometriosis with fibroids with PCOS or with another menstrual pain or health condition and I want to share a resource this month we're celebrating Alexandra and Sharni's first book, Wild Power, which is

five years old this month and we've been gathering listeners stories about how the book has impacted them and many include how the book has supported them through their menstrual health challenges including endometriosis and supported them in their own healing processes. So if you're looking for some support on your journey, you can get your copy of Wild Power wherever books are sold, or you can come and get yours at redschool.net. Okay, back to the conversation with the amazing Emma. I feel like there are so many layers of repair that we need to do individually and collectively here for all the silencing that's happened to women and for all the gaslighting that's happened across the ages and is still happening today and I feel like the storytelling piece is so crucial, isn't it? Like the way that you've told your story, and what happened to you when you met the woman who

had also had an early hysterectomy, and the kind of sense of relief that you felt to just be in the same place as someone who had had a similar experience. It's so meaningful isn't it it absolutely is my best friend is turning 40 she's about about to join me in the 40s and the other day she just talked about how much re-education we have to do as women especially you know as you get older and and you start realizing that the things you've been told all of your life aren't necessarily true and you don't have to put up with the things that you've been told that you have to put up with. And on my part, you can speak openly about the things that you've been told that you shouldn't speak about. Part of what made my experience so difficult is

that I was dealing with a problem that completely ruled my life. Like, honestly, I might not have gotten through not only high school, but middle school as well. If I hadn't had some help from doctors and gone through hormonal treatments. So it's something that affected my life that intensely, but I also couldn't, I couldn't, didn't feel like I could speak openly about it. And like you said earlier, if it was some other kind of ailment, then you would have had a lot of support and you just feel completely alone or I just felt completely alone so the storytelling element I think is vitally important because in the storytelling we get to be seen yes and just as

with another ailment we would receive more support I'm also thinking of the people who go through like massive feats of physical endurance like iron man competitions like triathletes who like put push their bodies to the limit and then they get medals and trophies and like international acclaim and I'm like Emma Bolden needs needs international acclaim and some trophies because do you know what she's endured but I mean it's like what people are having to live through every day and not only is no one giving them a gold medal for their strength and their endurance and their tenacity but it's actually being shamed and gaslit and yeah I'm like I would love to have a medal but I'm gonna make you a medal

I'm gonna send you a medal yeah and I think the one thing that endometriosis patients get a lot and patients who have I also had fibroids and polycystic ovarian syndrome so of and adenomyosis which I think that we get told a lot of the times that we're just sensitive to pain. That, you know, you're just overly sensitive to pain. It's not in, I don't think it's in the book, but I saw a female doctor one time who told me, well, my cramps aren't that bad. You just need to learn how to deal with it. You're just being hypersensitive to pain. And I remember reading an article about how adenomyosis is about as pain. It's one of the most painful conditions that a human person can have.

And I remember reading that and feeling justified because I was like, oh, okay, it did really hurt as much as I thought it did. And this is why I spent so much time in bed in a fetal position when I was in high school and things like that. yeah I feel like trusting your physical experience in the way that you're the way that you're experiencing pain is also good because so often doctors will just tell you you're sensitive pain sensitive you're fine let's get into this because it really gets into the gender bias from medical professionals thread in the book so I can't remember where I found this it might have been in the Shondaland interview that you did a study in 2017 found that doctors ask women less questions about their symptoms and were less ready to prescribe women drug treatments I think it's important to name that those these statistics are much higher for black women and women of color too. Very much. And nearly half

of female medical professionals 40 percent treated female patients reporting of chronic pain as a psychological emotional complaint rather than a genuine physiological disorder and this bit in the book really got me after the surgical accident where essentially the doctor made a big mistake huge huge mistake then had the audacity afterwards to say it's my opinion that the pain is not in her body it's my opinion that the pain is in her head and I'm trying to find my way to my question here really which is just what the fuck is probably my question yeah and I also want wanted to echo it's the state of medical care for women of color especially black women in the south where it's beyond atrocious it's inhuman and inhumane and i i just yeah i i can't even imagine. I don't know how in this time we're still allowing that to happen.

It's just unbelievably horrible. Just to drop a resource in there, you've possibly been connected to them, but Lauren, I think her name is from Endo Black, is doing really powerful work to educate. And, you know, one way that we can help to change this is by supporting EndoBlack. So I'll drop the link in the show notes for that organization. Yes. Awesome. Thank you. That's that's that's amazing. They do amazing work. They really do. Yeah. With that particular surgery. So my doctor punctured my bowel with the first incision. And he hadn't done a bowel prep, a full bowel prep. And he also hadn't given me antibiotics or

any kind of stomach medication before I had surgery. So I was highly at risk of sepsis. I was in the hospital for five days with a tube down my nose to like suck everything into my stomach. I couldn't eat or drink. It was horrendous. But I don't know why, but my gynecological surgeon either could not or would not repair the small bowel so i was open on the operating table long enough for them to get another surgeon from a movie theater where he was with his child to come to the hospital and scrubbing and everything. So I was, I was open for a while, all this to say, there was really no way that he could have seen anything because there was all kinds of stuff around in my, in my pelvis. And there was no way that he could have seen anything and been able to complete the

surgery and looked for the endometriosis so but he nonetheless told my mother that he thought this was you know that he didn't find anything and that he thought my pain was in my head and that it was it was the consequence of like a psychological problem and I just I don't know how my mother did it you know like my I don't I don't know how she got out of there without without just strangling him except for the fact that she was in an extremely vulnerable place herself. Like he just told her your, your daughter may die. Um, because I mean, that's, that was one of the, one of the consequences, like we're, we're doing everything that we can, but, um, you know, she's, she's highly at risk of, of sepsis right now. So, um, we're going to have to keep her in the hospital for a while and do some pretty drastic things. And in that moment of vulnerability, he tells her, oh, and also she's crazy,

basically. And she's just making all of this up. Which again, it felt to me later when he he repeated those kinds of things to me as well um it felt like it was almost like my initial reaction was oh well then it's my fault because I shouldn't have had this surgery in the first place so this accident was really my fault and it's just it's so it's such a weight. It's so psychologically damaging and emotionally damaging. I feel like we, as women especially, are trained to want to be good and want to be a good patient and not argue. We take a lot of the blame on ourselves. You wouldn't blame somebody who has like brain cancer you know you you're blaming yourself for things that happen in your body that you have no control over

yeah blaming yourself for things that you have no control over and that's what the system often perpetuates there's a few more things I want to speak about, but I'm just going to jump ahead to the end of the book because one of the things you do so beautifully at the end of the book is you somehow skillfully weave unanswerable questions together and find a way to hold yourself

and us as the readers in this space of we don't know so the final can I read the final paragraph or is that like a spoiler thing no that's okay yeah no I kind of I don't think it's a spoiler I'm not breaking any rules it's just so beautiful so oh thank you on on the last page of the book you've going through some of the stories that you ask yourself sorry going through some of the questions that you are asking yourself like I ask myself is the body I walk and talk and move around in now the same as my body before surgery if I still have uterine tissue could it still be said that I have a uterus if I still bleed at periodic intervals do I still have periods if there are no medical solutions, can these be

called medical problems? And you say, I tell myself the story or at least the details that I know, I remember, I don't remember, I shape, I shift, I order and reorder, I tell and retell, I wonder, will these pieces coalesce and connect? Will they rise to climax and fall back into place, into peace? And then at the end, you say, like, I wonder if it's even possible if a cohesive story is even a place in which a body and its soul can be. If instead the time we spend living is more like floating in a sea in which there's no such thing as sinking or swimming, in which the only choice is to be moved by its waves and to learn how to surrender to that movement. Wow.

Oh, thank you. It's so, it just feels so skillful and so profound to be able to land us in that place of surrender through all of this and find yourself in that place of surrender and I guess my question is like how is that going how is this practice of surrender for you alive at the moment yeah I feel like writing this book was a huge it was extremely therapeutic um and it was a huge part of that for me. It took me forever to write it. I actually started it in 2013. Right after I had my hysterectomy, and it was just like words came out. The book originally, the draft of this book that

I had for a really long time was straightforward chronological and now it's it's in a lot of pieces and there are other things that are woven in there um but I think that I had to get a I had to get a firm grasp on what my story was before I figured out how to convey the experience of that story to others. So a lot of the book was about reclaiming what I experienced. And finally being like, this is it, this is this is what happened, no matter what a doctor would say, like, this is actually what happened. This is this is truly what happened. And then I was able to sort of convey the experience of it happening. And it was really hard for me to get to the end of the book because I don't have an ending.

Like, I don't have a resolution that I would like to have. And I've had people after the book got published who reach out to me and said like well I hope that you know what's going on now and that you're not bleeding anymore and I'm no I still haven't figured it out but I've just I think that I spent so much time by just fighting just in a constant fight that I've finally gotten to a place where I'm able to listen to my body and trust my body I'm learning I'm not great at it yet I will say but um I am not and allow myself to rest allow allow myself to have downtime and not, I used to feel horrible when I was in a lot of pain because I'd feel like I wasn't productive. I wasn't this is, I don't know. It feels weird to say this, but I always thought that the ending of this would be a child,

but that was, as it turns out, impossible for, it was impossible for me to have had a child. And a lot of what I grappled with was like feeling like I was worthless because I hadn't done this thing that I was supposed to do. And I was told that I needed to do since I was very young. So a lot of it was grappling with, you know, teaching myself like I do have worth. Like there are things, this sounds so silly, but I actually had like a list of like, would you say this about anybody else? You know, would you say this about these people in your life who don't have children, who've done

amazing, who are just like incredible people? Would you say this about like Helen Mirren you know um so a lot of it has been about like re-education re-learning and like like you would not say about any other human being that um there's anything that's less worthy of them because they don't have children like that's not even something with anybody else that you take into consideration why do you feel like you're worthless because you didn't? So it's taken a lot of mental reworking, realizing that my life does still, you know, does have worth, that I do know what I experienced and that it's okay if I listen to myself and what I need, what my body needs in order to survive. So profound what you're saying, that you can trust your body and what it needs. And I say it like I'm good at it, but I'm not it's a daily thing same I have to I have

to actually like stop and remind myself like okay you know don't hate yourself because you didn't do x y and z today like you were in so much pain you can't stand up but it's it's a daily battle but it's it's a battle that is extremely important for me to fight so yes thank you I knew this interview was going to be um a really beautiful one and it has been um so soothing and like I hope our listeners feel the kind of sense of relief that I feel in my body you know hearing your story and hearing the place that you are in even as you hold all of these like unanswered questions and tangled messy unknowns you know we're so used to the fairy tale stories and the Hollywood stories of like xyz happens and then we have the bow tied and it's all like ticked on and

that's not never been my experience of life it's always been so much messier than that and your realness in the face of that is yeah it's just so beautiful to encounter Emma and yeah I I'd love to ask how people can connect with you if they'd like to. You know, what are you up to now? Oh, so I'm on Twitter, but I'm also, like, awful on Twitter because all I do is post jokes. There are some, like, very TMI tweets about personal experiences on there.. But yeah, I'm on Twitter and Instagram. There's a contact form on my website. I always, if people reach out to me, it always means like

so, so, so much to me. So yeah, I'm very open to that. And I'm doing something completely different, but not different right now. I'm working on, I'm actually working on two novels. Wow. Exciting. Yeah. It's really weird because I, you know, my, my master's of finance is in poetry and I've been trained as a poet and I still do it, um I've just been feeling really drawn to prose and decided to just go for it so we'll we'll see what happens with that um but it's

very much about uh it's about women's experiences and it's kind of a lot of it's based on medieval women's history but with a contemporary voice like the the main character in one of the books has horrible periods which is something i always wonder about when i read i think as a kid i always wondered, when do they go to the bathroom? Yeah. Like when do they talk about how, like the rags that they're using to clean up their period in any novel, apart from the Red Tent by Anita Diamante. That's the only one where periods are even mentioned.

I'm still hoping to get her on the podcast one day. Well, Hey, when your book is done, I look forward to welcoming you back onto the podcast so you can speak all about that one good luck with it I hope the muses dance around you thank you and thank you so much for joining me today it's been wonderful this has been such a wonderful interview like no question I really I really appreciate it thanks for joining emma and i today i'd love to hear how this conversation landed for you and i just love to hear from you about what you're enjoying on the podcast what you'd like to hear more of on the podcast if there's someone that you would love me to interview if there's a topic you'd love us to explore you can always email me at sophie at red school.net i would love me to interview if there's a topic you'd love us to explore you can always email me

at sophie at redschool.net I would really love to hear from you and I appreciate all of your feedback and the best way that you can support the podcast if you'd like to is by giving us a review on apple podcast so you can do that through any apple device. Listen to one of the episodes and then click review and you can leave your review. And it really helps the podcast to reach more people. So thank you so much for doing that. Great. That's it for this week. Thank you for being part of the community gathered around this work. I look forward to being connected with you next time.

And until then, keep living life according to your own brilliant rhythm.