It's the hymen story that gets me.
There are any number of shocking, enraging — and entirely relatable — moments in poet, editor and author Emma Bolden's stunning endometriosis chronicle "The Tiger and the Cage: A Memoir of a Body in Crisis." There are scenes of abrupt, confounding pain, of medical misdiagnoses and treatments that did more harm than good. And it's not even the wrenching image of the 17 year-old Bolden, chewing resolutely on the ice cubes in a cup of Diet Coke while her surgeon informs her and her stunned mother that he broke her hymen during a procedure that makes me gasp. It's the part where Bolden recounts, "He told me not to worry, that he had sewn my hymen up again. Good as new." It's also the part where she has a second surgery, and a second time that part of her body is torn and briskly restitched. "Prior to none of these procedures did I express a wish," she writes, "that should my hymen be torn, it should be sewn back up."
What makes the hymen tale so arresting is how damn typical it feels. A young and vulnerable female, suffering, and the professional healthcare response is a stunningly misplaced regard for her chastity or fertility. Bolden has other, similar anecdotes. She remembers being in the eighth grade, noting, "That was the year that doctors started telling me that if I wanted to have a baby, I'd better do it quick. I'd better do it young. I'd need to finish school, of course. I'd need to get a degree, of course. But I'd need to find a nice young man to settle down with, too — and fast. Then I could have a baby followed quickly by a hysterectomy."
After spending the better part of her life living with chronic pain, Bolden does not have an easy, fixable story to tell here. Hers is a tale instead of the lessons that suffering can impart, of the ways in which our bodies can betray us and then our doctors can further fail us. But it's also an intimate, eloquent personal history of survival and self-discovery. And it's one of the most riveting and accessible accounts of the experience of pain you'll read all year.
Salon talked to Bolden recently about the myths and realities of living with endometriosis, coming out as asexual, and her message of hope that "It's going to get better — even if it doesn't get better."
This conversation has been edited and condensed for clarity.
There are so many books about women's pain that unfortunately seem to have a particular agenda, where they're trying to sell a diet or mindset or some easy fix. In this book, you keep coming back to ask the questions about why this happened, how it could be fixed, but you don't have answers. What was it like for you writing this, knowing that you weren't going to be able to give people, "Well, just cut out gluten"?
It was really hard for me, not just in terms of what the audience may expect and need and want. God knows, I would love for somebody to say, "Just don't wear sneakers any more and you'll be fine." The thing that was even harder for me was, how do I write and finish a book when I don't have the answers I need to complete the story? I feel like a lot of chronic pain narratives have a very specific arc that ends in the person finally finding out what's wrong and reaching a level of health or fixing the problem. That still has not happened to me. So I had to think, how do I tell a story that doesn't have an ending, but still make the book end in a satisfying way?
We have this expectation of that traditional storytelling narrative. For people who've experienced this level of pain, there's the continued hope that there's an explanation, and that once you have the explanation, you will have a solution. This is such a much more liminal story. What made you want to tell it in the first place?
I think I had to. I didn't really feel like I had a choice. Part of the reason why I felt so compelled was that I felt like I had been living with these dark secrets all of my life. I finally came to a point where I realized, there's no reason to be keeping all of this secret and keeping myself from speaking about it. It's just a body. It's just something that happened to my body. But there are all of these social expectations that we have when it comes to talking about those parts of the body.
"There's nothing socially wrong with you just because you have a horrible period."
I felt like it was necessary to open up a space in which maybe other women could learn that a lot earlier. These things don't necessarily need to be secret. You can talk openly about your experience and your pain. You haven't done anything wrong. There's nothing socially wrong with you just because you have a horrible period.
Let's start where this story originates for you. You acknowledge that it dovetails with a mysterious experience that happened to you in the fifth grade. You can see correlation without necessarily assigning causation. But a lot of people you encountered wanted to connect those dots very neatly between the two. What changed in your life around fifth grade?
In fifth grade, I had this really strange and unsettling relationship with one of my one of my teachers. I know for a fact that it wasn't an abusive relationship, necessarily, but there were still lines that were crossed. I was very attached to her. But at the same time, there was just something that was not quite right. There was a sort of hair on the back of your neck feeling the whole time as well.
She left very suddenly, after spring break. And I developed a cough. I just coughed constantly, and missed two weeks of school. Finally my doctor realized, there may not necessarily be a physiological cause for this. It might be something else. That kind of cleaved my life in half, because a psychological reasoning provides a completely easy answer for physical pain. If the doctor can't come up with an answer and can't figure out what to do, I found them coming back to that incident over and over again.
There's an understandable desire to do that, both from a patient perspective and from a provider perspective. We'll find the answer and then we can fix it. What happened with you instead?
Yeah, that didn't happen. Things got back to normal, in terms of my social life and being in school. But that was the year that I started my period too, and that completely changed everything. My first couple of periods were normal. After that, they were so bad that I remember very clearly, every month, there would be one day where I would be throwing up and passing out at the same time. One of my parents would have to hold me up and the other one would have to hold hold my head and make sure that I didn't aspirate and things like that. That was the year that pretty much everything changed for me. It was like I was two different people. I had the mask that I put on in public and then, for seven days out of the month, it was like it wasn't even in my body because I was in so much pain and so sick.
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You say in the book, "Good girls keep quiet, letting others tell their stories. Good girls hold their truths until death." You have the actual pain. You have something emotional that happened to you that you can't quite name. You have this quest for answers that becomes increasingly detrimental and harmful to you as the years go on. You have this this system that doesn't want to deal with it or talk about it. Then you also talk about depression. What to you, looking back now on the years and years and years of this painful, difficult experience, was the hardest aspect of that?
It was bad. I would definitely say that the physical pain was hardest. But I'm still dealing with the psychological response to physical pain, especially when it got to a point where I realized, I'm in this much pain, and there's nothing I can do to get out of it.
I think that relates to a lot of conditions that aren't just physical pain. I suffered from PMDD, premenstrual dysmorphic disorder. I can remember being in these horrific depressions and having to tell myself, "I can't get out of this until the hormones change. I just have to grit my teeth and bear it." Literally grit my teeth, actually.
Let's go in on the story about your hymen. What do you wish had happened in that circumstance? What was communicated to you? What would have been a better thing for you?
I would just leave it broken, right? I remember when the doctor told me. My mother and her friend who's a nurse were both in the room and they were both like, "What? Why would you do that? Just leave it."
"I didn't say before I went into surgery, 'If you break my hymen, please repair it.'"
There are so many cultural implications and rules on a woman's body that you don't realize you don't have agency over and that take agency away from you. I didn't say before I went into surgery, "If you break my hymen, please repair it," because that was not even a thought.
You had a great advocate in your mom. You had someone who was on your side, who believed you, who asked the right questions, was constantly trying to get you good help. It's important to say, that's not always enough.
That's not always enough. My father was a great advocate, too. He came to some presurgical meetings, especially when I was under eighteen. I'd have to have a parent there, and my dad would come. Maybe this is a deep south thing, where sometimes it's beneficial to have a man in the room. He could fight in a different way, I think, than my mother and I could.
I do still have an incredible advocate and supporter with my mother. She had a lot of the same problems. She was very open about it. If I had not had that influence, and somebody I could talk to, I don't know how it would have made it through. But sometimes, not even having an advocate in there can help you. And then sometimes the doctors are even like, "Well, you're too attached to your mother. That's the problem."
For people who are going through different kinds of severe, sometimes debilitating menstrual and gynecological pain, what do you wish had been done differently? You talk about the medications, you talk about the surgery. Where do you feel like it really went off course in a way that was the most significant?
To be honest, at the time, I just needed to get through middle school, high school and college. That's all I was thinking about.
I did some treatments that at that time they didn't know enough about and were kind of experimental. The one thing that is the most damaging to me to this day are the GnRH antagonists, because I was on a drug that took me through menopause. I should not have been on it anywhere near as long as I was. I definitely shouldn't have been on it without taking a low dose of estrogen to make things better. That's the thing that I didn't realize was going to have consequences for my entire body for the rest of my life.
Where are you now? How are you, in terms of the physical and the pain and the experience that you live with?
"Hysterectomy was not a cure for endometriosis. Nobody said that to me."
It's really strange because I do still have unbelievable levels of pain. I still have periods, which is the weirdest thing. I still have endometriosis. I was not aware that hysterectomy was not a cure for endometriosis. Nobody said that to me.
I really thought that after the hysterectomy, I was finally going to be able to live and get my second chance at life. Then I had all of the crazy complications that didn't go away. I still have monthly bleeding and serious pain and nausea and all of that. I'm still dealing with the physical stuff. I don't have any more answers than everything that I know now is in the book, except now I know that I have early arthritis in some places because of medications. But on the other side, I do feel like it did give me another chance at life just in terms of how I feel mentally and emotionally. Having a hysterectomy freed me to be like, okay, this is what I need to do in my life. And it's time for me to do it.
This book is so interesting, because there is the presumption of "How much time do I have that I can find someone and have a baby?" The narrative is that the pain and the endometriosis are an obstacle to heteronormative marriage and baby. You take time getting to this point of asking, "Wait a minute. Is that what I want?"
Absolutely. I was thirteen when the doctors started telling me that basically, "We think you're going to be able to have a baby, but you need to do it when you're really young. You need to find somebody and settle down and have a baby as soon as possible." Thirteen is such a major age in terms of malleability and forming your ideas of what you're supposed to do and what adulthood is supposed to look like, that I just absorbed it. When I started dating, that was all that I was thinking about. "I've got to find somebody to have a baby with so I can take care of this." And one thing is I've heard recently having conversations is that they still say this. Doctors would also tell you the only way to make your endometriosis better is to have a baby. Which, PS, does not work, either.
It's just absolutely not true. I eventually was like, "Wait a minute, why? Why am I spending this much of my life focused on this?" And on the sexuality side, I never really was interested in the whole sex thing. I thought that it was because of medications I was on and everything that I had been through. I figured, "When I have a hysterectomy, that'll cure that." Then when I did have the hysterectomy, I was like, "Oh, good. I don't have to worry about having a baby any more. I don't have to try that. All right, we're good."
This idea of asexuality is still so taboo, and there's still so much shame around it, and this sense that it's a problem and it needs to be fixed. You're very clear in the book that there's a difference between having a low sex drive and wanting more and being cool with who you are.
"Asexuality isn't a symptom of anything. This is my identity."
So often, asexuality is treated like it's a medical problem that you need to cure with medications and treatments and all of these things. I finally realized, no, this isn't a symptom of anything. This is my identity, and I'm okay with that. I finished the book before Angela Chen's "Ace" came out. I read that book, and was like, wow, I wish I'd had this earlier. I probably would have realized much, much earlier that I was actually asexual and it's not just a side effect of medication or something like that. I don't know if I would have had my hysterectomy earlier. I don't know.
What do you want people who are in the same place where you are to know? Maybe it's a girl who's in the fifth grade or maybe it's a 42 year old who's been dealing with this as quietly as is humanly possible for decades. What do you want to tell people who are facing this experience?
I would tell them, it's okay if you're not quiet. Before I wrote this book, and especially before I had my hysterectomy, I would sometimes feel like I was going to explode because I was holding in so much every single minute of my life. I felt like I couldn't talk about this to anybody or let anybody know what was actually going on. When I started talking more openly about it, it really did release a lot of that steam out of the tea kettle. Also, I would want to say that it's going to get better — even if it doesn't get better. There are ways to care for yourself and make things better for yourself even if you don't necessarily have a medical resolution.
I would imagine that every month there is this anticipation of pain that must be very draining. How do you deal with the cyclical nature of it?
It is extremely draining. I actually have a graph where I can write it out and figure out when it's going to happen so I have a little bit of help there. Through most of my life, the way that I dealt with it was through work. Working on my writing was the only thing that could I could focus on that would override the pain a little bit. But over the past few years, I've decided to try a thing called rest, which I've never done before. If I'm a ton of pain, I will let myself hanging out on the couch playing ridiculous video games. I know that sounds completely insane that this has been a life changing thing, but it really it really has.