Bleeding full transcript

ALLISON BEHRINGER: This is Bodies, a show about exploring the mysteries of our bodies. I’m Allison Behringer.

KalaLea’s story starts in the same place that womanhood is said to begin: the first period. And for KalaLea it set the stage for a mystery that would dominate her very experience of womanhood.

It was 1982 and KalaLea was 11. She was small and slender then, just like she is today. It was summertime in Pittsburgh. 

KALALEA: A bunch of my friends and family. We were on my grandmother's block.

ALLISON: They were playing the traffic cop game, where everyone’s running and then the traffic cop says:

KALALEA: Red light green light yellow light stop! And before I’m at the finish line, I just felt like this weird sensation. You know, a wet gooey feeling between my legs. And so I ran to my grandmother's house. And I just ran to the bathroom and I pulled down my shorts. And I saw this red splotch of blood on my panties. And so my grandmother was like what's going on. And I said to her like I think I'm bleeding.

She just grabbed some toilet tissue and balled it up in her hand and handed it to me. And was like put this on your panties, put this between your legs. And she told me, go sit down in the back room.

My grandmother’s back room was small. All of the furniture is way too big for the space. There was this huge couch covered in plastic. But I knew better than to go sit on the couch because if you were anyone like 30 years or younger, it's pretty much off limits.

If there was ever a time to sit on a plastic couch, I would think that time would be now. So she just pointed to this red plastic stool and she just told me to go sit my butt down. Your mother won't be home for a few hours now. So just watch some TV until she gets here.

And she went into the bedroom and laid in the bed. That was like her favorite place in the world. If there’s 24 hours in the day, I felt like I saw my grandmother in bed like 16 of those hours. Doing crossword puzzles, reading the bible.

F​rom that point on, I just felt like I had to be still. My friends were out playing. I was indoors, and I was sitting there and just waiting. A lot of things changed on that day for me.

ALLISON: During her teens and early adulthood, KalaLea’s life and her period were pretty normal. But that silence and stillness that surrounded her first period would return. 

ALLISON: She was in her late twenties, living in New York City. And her periods had gradually started getting more heavy, more painful.

KALALEA: I just had this ritual. It was my period ritual. like I would know it's coming because I started getting cramps a couple of days before. And I would just kind of like go into planning mode: Movies, music, food, water, granny panties, castor oil, towel, heating pad, and the most important item: Stayfee long overnight maxi pads, with wings.

If my period came on a Friday and I had plans on Saturday, I might cancel them.

If I had on white sheets on my bed, I might remove those sheets, put on, like, my older sheets.

You know, your friends can say, I'm sorry, let me know if you need anything. 

But you are the one laid on top of red towels, in the dark, and just saying: just get to day three and all this will be over. And then you'll have another 28 days.

KALALEA: I didn't know enough to know that what was going on with me was more serious.

ALLISON: And it started getting so bad that she’d have to miss work on the first day, sometimes even the second day of her cycle. And so when she got a new boss, KalaLea had to explain herself.

KALALEA: I said to her, you know, I just have to forewarn you, I have really bad periods. And it's just best for me to stay at home, and work from home. And she had an issue with that.

ALLISON: And then one day she was having lunch with a coworker.

KALALEA: This coworker was a white woman.

ALLISON: And she told her coworker how her boss hadn’t been understanding about needing to miss work during her period.

KALALEA: And she was like, “Yeah, I've always wanted to ask you about that, like I can't believe that you have to miss work. You know, that's horrible.” I was like, “You don't ever have really bad periods?” And she was like no, like three four days done, it's not such a big deal.

ALLISON: I think that was a realization for me that, even though women didn’t like having their periods, it wasn't as dire of an issue. And as she started to have this conversation with more of her friends, she started noticing a pattern.

KALALEA: It definitely occurred to me that the women who were dealing with period problems were all Black women.

ALLISON: Granted, KalaLea says, most of her friends are Black, so it’s a perfect sample, but still.

KALALEA: And I think we often look to the women around us to figure out what’s normal, what’s healthy. But when those women are suffering from similar pain, it can be a dangerous thing to calibrate our health to. It can normalize something that’s ​not​ normal, not healthy.

ALLISON: And as KalaLea would later figure out, this collective experience of heavy periods was a symptom of an even more menacing condition affecting black women. But for the time being, she continued with her life, her period ritual becoming more and more elaborate.

ALLISON: It was the early 2000s and KalaLea was in her early 30s. She started a photography project called The Strangers Project, where she’d ask men she met in the course of daily life if she could take portrait. One of these guys was Mr. Singh, a taxi driver. And after she took his photo, they became friends and she would ride around with him in his taxi.

KALALEA: And on the way home one day, I remember it was this gush, this gush of blood just kinda came out of my body. When you have on jeans, you feel it come out but doesn’t have anywhere to go so it just kinda like sits and squishes around. Kinda slightly opened my legs and saw blood seeping like out of my jeans onto his seat. Like a lot of it. I just said to him, I don't feel well.

ALLISON: He pulled over and KalaLea ran across the street to a bodega to buy peroxide, her tried and true solution for removing blood.

KALALEA: It was this dusty brown bottle.

ALLISON: By the time she got back, Mr. Singh had already cleaned up the back seat and laid down a bunch of towels.

KALALEA: I just kept thinking I can't believe I bled on Mr. Singh's car seat. Like this man is the most religious, gentle and kind man that I’ve ever met. I couldn't imagine him even talking about periods with his own wife. I felt like I had defaced his property.

So I just told him “I'm going to walk to the subway, thank you so much, I'm really sorry.” He pointed to the front seat and he was “No, let me ride you. You can sit here.” 

We rode the rest of the way home in silence.

ALLISON: Overtime, as her period got worse, the list of places where KalaLea bled grew. 

KALALEA: I've bled on various bike seats. I've bled in the movie theater. New York City subway, the Salvation Army, in my best friends living room, my boyfriends bed, on the beach, in the Atlantic ocean. Yeah, a lot of places. A lot of places. 

ALLISON: But in spite of all this, things were going well for her. She got really into vegetarian cooking and studying nutrition, she started traveling – to West Africa, Mexico, the Dominican Republic. 

She also became a yoga instructor. And then one day, she fainted. Hit her head on the way down. An ambulance took her to the hospital. And the doctor started asking her a series of questions:

KALALEA: Have you bumped your head lately? Do you play any sports? How about your period? Is it normal?

And I said to him, well what is normal? You know, I don't know, I guess I do have a fair amount of bleeding and pain during my cycle. But doesn't every woman?

ALLISON: Sure, she knew from her coworker that not every woman has periods like hers, but still, the doctor never used the word "​ab​normal" when talking about her periods. The doctor ordered a series of tests. And after a couple of hours, he came back and he tells her, “Looks like you're anemic.”

KALALEA: Anemic? And I had never heard that word before, I don’t think.

ALLISON: The reason that KalaLea fainted was because she was anemic. So the doctor prescribed some iron pills. But the doctor didn't ask her any more questions about her period. And Kalalea left the hospital without knowing why she was anemic.

KALALEA: I don't think he connected it because he didn't dig deep enough.

You know how life is. You go on. A lot of people who say, like, how could you live like that for so many years? For me, I guess I just accepted that this was my thing. You know, like, some people have warts, some people have chronic back pain.

It didn’t really feel like there was anything I could do about it. I was taking the iron. I was trying to get as much rest as I could.

ALLISON: But rest was hard to come by. Not long after the fainting incident//she fainted, she opened a cafe in Brooklyn. And the excessive bleeding, the pain, the weakness from the anemia. She just dealt with it.

KALALEA: It’s incredible what you get used to, how you adjust to your own struggle, to your own pain.

ALLISON: But then the blood clots started.

KALALEA: A round globby, very dark red blob. Sometimes it would be like very small like the size of like raisins or peanuts. And the first time I remember it, I was taking a shower, like it felt like I was about like push out a teeny baby or something, i was like, uhhh, what's that pressure? what’s that pressure? and a blood clot the size of an orange. I had to like put my finger in the blood clot to get it to go down the drain.

ALLISON: A couple months later, KalaLea had a pelvic ultrasound. The doctor handed her the results. And he told her: You have fibroids.

And while she’s trying to take in this new information, she’s also trying to read the results.

KALALEA: And the findings were that the uterus measures...

ALLISON: And so it’s hard to fully process when the doctor starts explaining what fibroids are. Like when he tells her that fibroids are benign tumors that can grow in and around the uterus and that on rare occasions they can be cancerous, but for the most part, fibroids are noncancerous growths.

KALALEA: These are diffuse areas of heterogeneity within the myometrium…

ALLISON: He tells her how the number of fibroids that a person has can vary.

KALALEA: At least three masses are seen within the uterus.

ALLISON: The size can vary too. From a few millimeters to the size of a baseball.

70-80% of women will get fibroids at some point during their reproductive years, normally in their 30s and 40s. A woman can have fibroids and not feel any negative effects. Or, they can cause, well, all the things KalaLea had been going through. She had a bunch of small fibroids that were pushing on the walls of her uterus, which was causing uterus to expand.

KALALEA: The uterus measures 11.2 by 8.7 by 9.2 cm.

ALLISON: A normal uterus is the size of a fist, but KalaLea’s had swollen to the size of two fists.

And when fibroids push into the wall of the uterus, it bulges out and there’s more surface area for the build up of tissue or endometrium, the lining that’s shed during a menstrual cycle.

So if there is a higher amount of surface area, there's more tissue that builds up, more tissue to be shed, and as result, more bleeding. So that’s what causes the excessive menstrual bleeding, the pain and the anemia.

KALALEA: The doctor says he sees this a lot with people like me. Black women. And because he’s a black doctor and most of his patients are black, I believe him. I wanted to know more, like why was this happening to me, what was going on, what caused them, but there wasn’t much of an explanation, it was more like, ​here are your results.

ALLISON: So if you google fibroids, like KalaLea did, you’ll find that African American women who have fibroids are three times more likely to develop severe symptoms, as compared to white women. And if you keep googling, you’ll find studies linking this trend to everything from diet to genetics to even the use of hair relaxers. Here’s Dr. Ebbie Stewart, a researcher at the Mayo Clinic. 

1. EBBIE STEWART: So we don't really know what causes fibroids. It's really amazing given how many women have them. For many years we just kind of relied on hysterectomy as a one size fits all treatment and didn't investigate the basic biology and epidemiology. There are multiple risk factors that are associated with fibroids but nothing that really can tell us why there is such a big disparity between black and white women.

But there's also some evidence that the experience of stress and racism may actually be tied to fibroid risk. Various kinds of stress including racism can change biology, that stress hormones go up that can have an effect on many body systems.

ALLISON: We talked to a couple of doctors about this, and It’s worth noting there isn’t enough data to scientifically prove direct causation between racism and fibroids. However, this connection between experiencing racism, chronic stress and its effect on the body ​is ​part of a growing body of research.

And that research really resonated with KalaLea.

KALALEA: Black bodies black people black women are [sigh] are just not as important as other people in this country. When I was a little girl, there wasn’t a Martin Luther King Jr. holiday. But my mother would say that we were going to stay home that day so we would watch a series called Eyes on the Prize.

MUSICAL INTRO: “I know the one thing we did right was the day we started to fight. Keep your eyes on the prize, oh lord...”

KALALEA: And watching that, there was a story about a little boy named Emmett Till. A lot of people know this boy's story by now. On August 21, 1955, two teenagers from Chicago boarded a train and headed south to visit family in Mississippi.

And apparently the story is that this woman, a white woman, said that he whistled at her, or flirted with her, something like that. And that night her husband and her brothers showed up at the house where Emmett Till was staying, banged in the doors. 4 days later the boy’s body was found in the Tallahatchie River, with a cotton gin machine around his neck and swollen body. He had been shot.

This is a 14 year old boy. And that is a story that I watched when I was like 12 or 13. To have that knowledge that something like that could happen to somebody that looked like my brother​.

And as I understand more about the body and our connection to spirit-- to watch that during a time where my reproductive organs were forming, and as I was moving into puberty. How can I not have stress, internal stress, from just knowing that my skin could get me killed? How could that not affect my cycle? How could that not affect how I develop as a woman? I think pain is passed down. Pain is passed down.

ALLISON: As KalaLea sat in the doctor’s office, with the results in her hands and trying to process her new diagnosis, the doctor told KalaLea her options. They could try​ uterine embolization,​ a less invasive procedure, but there was the risk of infection and changes in sexual function. And it’s not always effective.

They could try a ​myomectomy​, a surgery to remove the fibroids, but there was a good chance that the fibroids would eventually just grow back.

One of the scary things about fibroid surgery is that oftentimes, the surgeon can’t know the severity of the fibroids before opening up the uterus, so you might go into the operating room not knowing if you’ll come out with your uterus intact.

And then, there was also the option of ​choosing​ to have a hysterectomy. Which is where they

take everything out – everything – your uterus, your ovaries, your fallopian tubes, everything. KalaLea was not ready to take those chances. She did not wanna have surgery.

KALALEA: I didn’t really have a lot of faith in Western medicine overall. For things like this, it was just very clear that there hadn’t been enough research, or interest. And this country has a history of experimenting with Black people in particular.

I mean, there’s the Tuskegee syphilis experiment that lasted for like 40 years, when they had a cure for syphilis they allowed black men to basically die from a disease that was curable.

ALLISON: And so she decided to take the last and final option: No procedure, no surgery. By this point, KalaLea had spent years studying yoga and nutrition. She decided to use everything that she knew about the body – her body – and she was going to fight these fibroids herself.

KALALEA: I felt like I had the power, just like my body created them. I believed that I could get rid of them – that I could heal myself. I really truly believe that we are powerful in that way.

ALLISON: And she went into healing mode. She ate raw calf’s liver. She tried fasting, raw foods, acupuncture, Chinese herbs. She tried everything. And along the way, she saw improvements. \

Like when she started doing Reiki, a Japanese energy healing practice, and she went from having pain for 21 days each month to only 3 days of pain each month. Or like when she went in for an ultrasound and showed her uterus had actually shrunk a little bit in size.

KALALEA: That gave me a lot of hope in terms of me being part of the process to heal myself. But I was exhausted. You know. And I didn’t feel like I was part of the world anymore.

ALLISON: And for every gain she made through all of her efforts, the fibroids would inevitably retaliate.

KALALEA: The worst pain that I experienced was this feeling of a hot needle like being inserted into my vagina. I would sometimes be walking down the street and I would literally need to stop and hold on to something.

It was a reminder that the fibroids were in control. I remember calling my mother one night. I was in tears, crying really hard.

I confessed to her that I was thinking of killing myself. I didn’t really feel like I had a future. I think I kept thinking about the worst case scenario, which was having a hysterectomy,

I just wasn’t ready. I just wasn’t ready.

ALLISON: But she was tired of suffering so much. And managing her fibroids was draining out what little energy she had. Then something clicked in her. If this was gonna be her life, then why not live it in a paradise?

KALALEA: I felt so isolated that I didn’t think it’d be such a big deal if I left the country. You know, like to live in a place that I wanted to live in. I figured that if I wanted drastic results, I needed to make a drastic change.

ALLISON: And so in 2011, she gave up her life in New York and moved on her own, to Bahia, Brazil.

KALALEA: It’s a very magical, beautiful, special place. All things that are important to me like nature, happy people, brown people, the ocean, good food, and I can't forget music! I fell in love with Brazilian music.

ALLISON: The first week she arrived, her period came. It was time for her period ritual.

KALALEA: But on this day, I was just like, I can’t stay at home. So I took my bathing suit and I walked towards the ocean. It was only me on this beach. And I took off my bikini bottoms and I walked into the ocean, really slowly. 

And I was bleeding at the time, you know, and I just kept walking and going deeper and deeper and deeper and asking the ocean and asking the universe to please cleanse me. To rid me of this pain, to stop the bleeding. I don't know if I was asking for a miracle, but I just needed a reprieve. I did bleed in the ocean. And I just couldn't stop. I felt very alive and it was the first time that I felt, like, healthy!

ALLISON: Living in Brazil, KalaLea did start feeling more healthy and she had less pain. She was learning Portuguese and she joined an all women’s Capoeira team.

KALALEA: Capoeira is a Brazilian martial art that some enslaved Africans would practice together on plantations. They would play music and appear as if they were dancing, but what they were really doing was building strength.

ALLISON: KalaLea starts building strength too and after months of training, it was finally time for the baptism, the batizado. To receive the next cord – kinda like a belt in karate – you have to go up against a more skilled capoerista.

KALALEA: So during the batizado, you wear white, all white. So on the day of my batizado, I wake up and I got my period. So I just need to prepare myself. I take one Brazilian maxi pad – which are no match for Stayfree Maxi, long, overnight, with wings – and I place it on my panty, then I take 3 more maxi pads and stick it on top of that one. And then for extra measure, I insert one super sized tampon. And then I put on my white pants on, white t-shirt. And grab my red hoodie.

It was my turn. I shook hands bowed and began. You have to prove you know the various moves. So the foundation of capoeira is ginga, that’s when you rock back and forth.

So it’s like, I’m ginga, ginga, ginga, and I'm moving. Then I decided, OK I'm gonna go to my next move, skiva. And then that’s good, ginga. Great. Everything’s going really well. Ginga. Ginga. Mencao. Great, wonderful. I’m feeling so good. I’m feeling energized, this is going well. I’m so happy. And then I decide I have to do something more creative and show offy. So I decide to do a meia lua. And it’s basically where you kick one of your legs in circular motion.

And my first meia lua, I felt this push in my womb. It’s ok. I keep going. Do another meia lua. Go down, skiva, Jinga, jinga. Get up again. One more, meia lua. And bam!

I can feel it. By this time, I know what’s happening. I’m bleeding. I’m bleeding bc i can see it on the faces of my fellow capoeiristas. The Mestre who I’m playing with, the master, he stops.

And I just run, I grab my red sweatshirt and I wrap it around my waist and kneel down to hide the bottom half of my body.

ALLISON: She got her green cord that day, but within a few months, she was very anemic, too weak to practice, dizzy all the time and afraid she’d faint again.

KALALEA: I realized that it was time to go back to the States. That I had to do something about it. And that maybe surgery was the way.

KALALEA: I had always feared that having surgery could mean me losing my uterus. And it’s crazy because I actually never – not never, but I wasn't interested in having children. But I wanted to come to that conclusion and to make that decision on my own. I didn’t want anyone to make it for me. I was a 42 year old woman, so the likelihood of me having children was very unlikely, so what was I holding onto?

ALLISON: I think KalaLea was holding onto more than having children. She was holding onto her power to control her body – to have agency over her organs.

And in delaying surgery for so long, while ​of course​ it meant years of pain, it also brought her to a place where she felt like she could do this surgery on her own terms.

She was ready! It was time to get the fibroids out. She moved back to New York. She did her research and carefully chose a doctor, a woman. And she made an appointment. So I told her, if I’m going to have surgery, I need to be clear about what's most important to me. She opened up her notebook and read her “surgery wish list” to the doctor.

KALALEA: I’d like to have a normal to strong libido. I’m ok with not having children. I really would prefer a vaginal procedure please. No cutting my stomach. I really want to be able to wear a bikini one day in the near future.

ALLISON: The doctor looked her in the eye when she spoke. KalaLea knew she was listening. The doctor ordered some pre-surgery blood work. The results showed that her anemia was back and she was sent to get a blood transfusion right away. This would be her third blood transfusion in five years.

Finally, they set the date for the surgery. And then KalaLea started to very intentionally visualize the surgery.

KALALEA: I would sit in silence a lot, really try to have a conversation with my womb. I remember hearing a voice say, it’s not going to be easy.

ALLISON: The morning of the surgery, KalaLea met with the team of three women doctors who would be performing the surgery. She gathered them around her and looked into their eyes.

KALALEA: I said “OK, this is probably what’s going to happen. You’re not going to be able to get it out. It’s not going to be able to come out of my body.”

So I want you guys to look at each other. Take a deep breath, three times, look at each other and try again. And if you can just do that three times, look at each other, take three deep breaths, try again. Look at each other, three deep breaths – keep trying. You’re gonna be able to get it, but it’s not going to be easy. 

If after the third time, you look and I’m losing blood and it doesn’t feel like I’m going to make it though, cut me. But please, take your time. We can do this together. And we put our hands together and I said, we can do this, I love all of you. I don't even know you very well, but I have so much respect for the work you do.

And they were like OK [laughs], we’re gonna do it. And we hugged.

And they put me on the gurney. They say, what do you want to listen to? We can listen to music. I said Brazilian music, for sure. [laughs] And yeah, the next thing I knew I was asleep.

I woke up, and two of the doctors were over me and they said, you were right! It was so hard! But we did what you told us to do. We took a deep breath and we took our time and we got it out. So you had a vaginal, we didn’t have to cut you.

I felt so connected, to humanity and to these women and to my own body. I felt like I can do it.

ALLISON: It's been 5 years since KalaLea had surgery. Today, she is healthy and pain free. No more period rituals. No more Stayfree Long overnight Maxi pads with wings. As we close I just wanna say thanks for your response to episode one. Thank you for your emails, the shares, your participation in the Facebook group – it’s been incredible! This is what Bodies is about – open conversations with one another. This week in the Bodies Facebook group, we’ll have links to studies and stories that look into the impact of racism on health. There will also be resources about fibroids. And as always, the facebook group is a place for discussion – a space to share your stories and reactions to the episode. Nothing is off the table, and everyone is welcome. You can find a link to the Bodies facebook group in the show notes or by going to kcrw.com/bodies.You can also follow the show on Twitter at @bodiespodcast and me at @albtweetin. That’s ALBTWEETIN. Also, if you have a medical mystery that you think would be a fit for the show, I’d love to talk to you. Email me at allison@bodiespodcast.com. If you like Bodies, please leave a review on Apple ​Podcasts - it really helps other people find the show. Th​anks to everyone who’s already written one. Finally, Southern California listeners, stick around after the credits for an invitation to a Bodies live event. If you don’t hear anything, unfortunately that means the event’s at capacity.

This episode was produced by me, Allison Behringer. It was also produced by KalaLea. Editorial Advising by Sharon Mashihi, Kaitlin Prest, Camila Kerwin and Kristen Lepore, Thanks also to Whitney Henry-Lester, Chiquita Pascal, and Caitlin Pierce who provided feedback on this episode. Original score and sound design by Dara Hirsch. The beach song was composed by Michael Buishas and Alejandro Salazar and recorded by Lorenzo Wolff. The capoeira music was recorded in Brazil by Soufian Aaraichi with Mestre Sapoti. Additional music from Audio Network and meditation sounds by ​C. Meeson Cover artwork by Sarah Bachman. Episode art by Kathy Farthing. KalaLea would like to express her gratitude to her mom and brother and some dear friends from Brooklyn and Brazil who supported her during this time, as well as the three surgeons who exercised compassion and understanding. Bodies is made with support from KCRW’s Independent Producer Project. Special thanks to managing editor Kristen Lepore, as well as Nick White and the whole KCRW team. I’m Allison Behringer and this is Bodies. See you in two weeks.