*** TW / CW: This episode features brief mention of suicidal ideation and a detailed description of chronic pain. ***
Kayla Harley is a certified GYROKINESISⓇ instructor, Optimal Life Breath Pathologist, doula, and energy healer helping dancers, athletes and everyday movers alike improve their quality of movement: for breath integration and to prevent injury. She is an International Practitioner and among the forerunners in the International Association for Blacks in Dance. She believes firmly that the body has the power to heal itself through active listening and diligent response, and knows this first-hand: as she lives with trigeminal neuralgia, chronic fatigue, and muscle spasticity. Much of her healing has been in the use of holistic methods to manage her own chronic pain and fatigue, and this deep personal work has informed her practice. The work that she does is exploratory and includes Shamanic practices that naturally generate a sense of connection to the divine from the inner-being, outward. Her health and wellness brand, Beebodi, is both a journey of her personal life and testament through healing and naturopathy; as well as a guide to creating a personalized wellness plan and regimen for others.
Tune in as Kayla shares:
- that she was injured during a tour as a dancer — and that this led to all her subsequent health issues
- that she struggled to be understood by doctors and experienced gaslighting
- how her race has played into her relationship with the medical industry
- that she was initially diagnosed with chronic TMJ and eczema before being diagnosed with trigeminal neuralgia (TN)
- the importance of accepting her chronic pain — from within — in order to find solutions
- that she’s cycled through every possible medical solution to TN — from epilepsy meds to opioids
- that she now uses holistic methods to manage her pain: self-hypnosis, breath work, IV vitamins, and reflections on her experience as a doula
- what her pain feels like: and that it can travel from her face all the way to her chest
- that she experienced suicidal ideation as a result of her pain
- that she’s had to teach herself a new way of speaking in order to better manage her pain with mindful facial movement
- how she taps into her spirituality to find healing: through her religious beliefs and connection to her ancestors
- other holistic methods she uses for pain management: CBD, cannabis, and massage
- how the US healthcare system has failed her, and why she looked abroad for inspiration in her healing
- all about becoming radical about your joy
The Trigeminal Neuralgia Community on StuffThatWorks currently has 235 contributing members. As more people contribute, the insights become smarter and more personalized. To contribute to the research and join the TN Community on StuffThatWorks, complete the treatment effectiveness survey.
Here’s a look at the most INDICATIVE triggers for TN, based on the experiences of the contributing members of the Trigeminal Neuralgia Community on StuffThatWorks. On a scale of 1 to 10, the higher the score, the more indicative the trigger is of TN.
Here’s a look at the most INDICATIVE symptoms for TN, based on the experiences of the contributing members of the Trigeminal Neuralgia Community on StuffThatWorks. On a scale of 1 to 10, the higher the score, the more indicative the symptom is of TN.
Lauren: All right guys, thank you so much for joining us today. I am here today with Kayla Harley. Kayla is the founder of Beebodi Marketplace. She's a GYROKINESISⓇ instructor, and she lives with trigeminal neuralgia, muscle spasticity, facial pain, and chronic fatigue. So she's going to talk to us about all of this, and how it's also informed her movement work. So Kayla, thank you so much for joining us.
Kayla: Thank you so much for having me, Lauren.
Lauren: Absolutely. It's such a pleasure. We were just saying before we started this interview that we only just connected very recently. And it's a lot to jump into, a very loaded discussion about personal health and your journey with wellness and movement. But I'm excited to do that because you seem very connected to self, and to your body and mind connection. So I'm really excited to dive in with you. So thank you for being here today.
Lauren: So let's, as we say, start from the very beginning. Can you tell us when you first realized that there was something going on in terms of your health, and what steps you've since taken to control your health and keep symptoms at bay?
Kayla: Sure, it's been a journey. It feels like forever actually, to be honest. I have no sense of time with this, this healing space that I've been in. But it has truthfully only been about five, maybe six years now. I was touring, dancing and performing with a professional company. I was in Brooklyn, New York at the time, preparing to put together a performance, a dance concert. I would say I was at the peak of my career. I studied dance in college. I'd had a career and moved from the San Francisco Bay Area through Chicago, and there I was in New York. And I remember coming home, getting off of public transportation, and feeling a sharp pain in the side of my leg. And I just stopped. I was, like, what is that? Because as a dancer, it's a part of your profession to be in tune with your body. And so it was important right away that I listened and made sure that I wasn't injured, and that it wasn't going to inhibit my next day of work — which was rehearsal, a full day of rehearsal, might I add, usually from about 7am till 3pm, and sometimes 6. So I stopped, I had a moment, I took it in; it didn't make sense to me, because I didn't know where it was coming from. But I just kind of went with it. And so, days, weeks went by, and the pain started to progress. The pain started to trickle upward, from my leg to my hip, and ultimately my shoulder. I continued to perform, continued to dance. I knew something was wrong; I couldn't put my finger on it. So I started to seek holistic care right away. Acupuncture, massage, Reiki; I just needed people who could support me in my journey of listening. I had learned early not to trust in Western medicine and Western doctors, because they go to the numbers, they go to the charts, they go to the screenings, they go to all the tests. And it’s like they never hear you. So I cancelled that out from the beginning. But then it came to a point where I actually needed to leave New York and come home to the Washington DC area, because the pain was so severe, and it was starting to spread.
Ultimately, it made its way up to the right side of my face, my jaw and temple area, and ultimately, my eye.
So all the muscles started to clench and tighten and close around that space. I came to the point where I almost couldn’t see out of my right eye. So I went home, I just decided to rest. Went on bed rest for a couple of weeks, I want to say a solid three months, and just did nothing. At that point, I needed to find answers. So I ended up going to a doctor after all, Western medicine, doing all the things that I said I didn't want to do — the testings, the screenings. I went through a couple of doctors actually. It just was interesting. I felt like I wasn't heard, I certainly wasn't supported. They were so sure that it was something to do with mal brain activity. Initially, MS, maybe cancer, because my symptoms were so multi-layered, and chaotic. It just didn't make sense what this condition could possibly be. Because as much as I was in pain, as much as things were going wrong, I still was able to walk, take care of myself to some degree. Now, I was very faint. I started to experience chronic fatigue to the point where doing simple things like washing dishes, vacuuming the floor … I would need to pause, stop, sit down and sometimes take a nap for like three to five hours. How can you explain that to someone? How can you say … I was a super athlete at one point, and a dancer … to now I'm almost completely debilitated in my day-to-day activity.
Lauren: And presumably unable to work as well. I mean, this is your bread and butter, your body — and your body's malfunctioning.
Kayla: Exactly, exactly. So went through all the things that they asked me to do. And they found nothing. They found — according to them and their results — that I was completely healthy, and it was probably in my head. And you and I had discussed this prior to coming on … that they recommended I see a psychologist. Now what's interesting about this is, I was listening in on a talk yesterday about the future, about data sharing and technology, and what that looks like. And they brought up the fact that from a global perspective, refugees — but from a domestic perspective, minorities — don't trust that as a recommendation. Because it's sort of scars you. They put it on your record, and you don't know where they're going to share this information. And no one wants to … speaking of bread and butter … run the risk of losing jobs or losing out on opportunities should this information be shared that you had to go see a psychologist or psychiatrist — because doctors felt like you were mentally or emotionally unstable and not willing to accept their advice, their results and their diagnosis. And that you probably are taking it upon yourself to stretch this experience.
Lauren: It’s the epitome of gaslighting. This is exactly what gaslighting is. And it's worth noting here — and I should have mentioned it at the beginning of the interview, too — you’re the third woman with trigeminal neuralgia that we're having on the show, but the first Black woman living with trigeminal neuralgia, too. And it sounds like you went through a few more doctors, as well, than the white women who've been on the show. So that's an interesting point, too.
Kayla: I did. I went through probably 12 physicians and specialists just in the beginning of understanding what this was. And let me tell you, it was a Black woman who looked at me and said, “I know what that is.” From that moment, I was able to see the next person who I needed to see — who was a foreign doctor, who said, “That looks like trigeminal neuralgia.” And they kept, Lauren, discouraging me from doing my own research. They were, like, “Don't Google search, don't look on your own, don't self-diagnose.” But it was coming into those office visits, with my research, writing down my symptoms, being vocal and being my own advocate … that was the answer to helping them figure out what it is I needed. So after seeing the Black woman who spotted it right away, and then seeing a foreign physician who was a far better listener, even though he still had his own biases, and I'm going to touch on that in a second … and he dared to … what he said to me was, "I see girls, young girls like you, all the time, dancers who come in, and they do all these crazy things with their bodies, and they want help.”
This was a pain specialist, and I'm thinking in my head … was it your job to tell me that? Or can you just help me?
Lauren: It’s just inappropriate. Injuries are part of the job. You're using your body.
Kayla: And why do I need that comparison in this moment? How is that relevant? How is that helpful?
Lauren: Well, and why is an athlete ever criticized for injuring themselves, but a dancer is? Why is this art of movement not also considered … I mean, these are the same thing in my head. It's the same level of skill with your body. But it's interesting that an athlete is expected to get injured, but a dancer gets injured and you're being judged.
Kayla: Facts noted. I had to get an epidural on the side of my face, just to release the pain intention that was going on, just for me to even experience some sense of normalcy. I also needed to see a dermatologist because I had eczema, and the amount of pain, inflammation, burning, scratching, screeching … it felt like someone was taking a knife to the side of my face and slowly cutting me, all day long. As well as a fish hook hooked inside of my jaw, and being yanked and pulled — like someone is trying to pull me out of water. On top of the feeling of fire ants in my scalp crawling across my skin. I thought that I needed some kind of blood flesh. I thought my blood was contaminated, and I needed to clean it out because of the the sensations that were going on. And I recently had a doctor … when I told them I had TN, they were, like, "You probably don't have TN.” Because they asked me to describe my symptoms, and I needed to take a pause. Because there's so much to trigeminal neuralgia, that it's hard to explain. And they said, “Well, you probably don't have it because you don't forget trigeminal neuralgia.” And I was, like … I just need a moment to begin because this experience, this diagnosis, this condition, is extreme; it's hard to believe. And it's certainly hard to wrap your mind around if you don't have it. Being a Black woman and sitting down on top of a doctor's table is so hard. Because I often hear from Black women the reason why they don't trust physicians is because of this glow. You come in, and you look fine. You look like you've been out in the sun and you're glowing and you don't have issues, and all of these things. How could you possibly? There's nothing wrong with you. And so it's like, where do you go with that, when people are already denying your right to say that there's something wrong with me, and I don't understand, and can you help me? And the reason why we’re going to doctors is because historically as Black women, we've been discouraged from tapping into our own knowledge, inherent wisdom, of healing, of the earth practices. Everything about where we've come from is bad, is witchcraft, it’s voodoo, it’s evil, it’s black magic; it's not proven.
Lauren: It's fodder for an illegal experiment as well. It's like the body being abused, as well, is what we've seen in Western medicine, particularly where Black women are concerned.
Kayla: Exactly. So we can't win for losing. We do it our way. So you need to go see a doctor … you go see a doctor, and it’s, like, “Uh, I don't know how to help you. You’re healthy, you're fine. Maybe it's in your head.”
And then that stigma of being all these things, and you're frustrated, and then you end up being the angry Black woman who can't be helped, who's got all these symptoms, who has health issues.
This is why they have tagged this condition, Lauren, ‘the suicide disease’ — because you can't find any solutions, you can't find the help that you need. You're going through all these manic experiences; you're broke because you can't walk. I'm sorry, sometimes you can't walk. So you're stuck in bed all day, because you're sensitive to light, you're sensitive to sound. You have all these triggers that don't motivate you to take the day. I would say … being a Black woman to my advantage, I started to tap into the strength of my ancestors and say, okay, Kayla, if they've been through medical experiments, if they've been through slavery, if they've been through all these things, you got to rise up, you just have to. That’s the only answer. And that is a problem within itself, having to identify as a Black woman when you feel like you don't want to. I don't want to take on the stigma of being strong when I'm being abused and being mortified on a physician's table. How do I navigate that?
Lauren: And just living in pain, period. You’re living with this chronic pain that no one has answers for.
Kayla: I’ve had to hypnotize myself. It's been said that positive affirmations and meditation and all of these things are not the remedy for pain. And I agree. It is not the ultimate remedy; it is not going to take you out of the pain experience, you still have to experience the pain body. So that's the thing, too — accepting and being in the pain body in order to find solutions. That's hard.
Lauren: I like that you mentioned that, though. Because it's not about pretending that this doesn't exist, or finding a way to agree with the people who have denied you along your path to diagnosis. It's actually about accepting it within, and going … okay, I hurt. Because how do you begin to heal until you accept that?
Kayla: Yeah. It’s a lot. There I was, got the diagnosis. They gave me everything under the sun — epilepsy medication, oxycotin, all the painkillers, muscle relaxers that I felt took me out of my space as a human being, and my ability to just operate and function on a day-to-day. And I think that also probably attributes to the suicide component as well. If you are over-medicated and you feel like you don't have any hope and there are no answers, but try this, then … So I just put it aside. I was, like, I'm not going to take these medications. It's not doing anything for me. I'm just going to up my dosage of vitamins. I do something called IV drip therapy, which is your vitamins liquidated and they just insert it like an IV into you to help you get some power and some energy. I am a certified breath pathologist. So I chose to use my breath work to help me on a day-to-day. I also find a lot of strength in teaching others the power of breath and movement. Because sharing my knowledge from my lived experience and my research empowers me. I'm also a doula. So I work with mothers in helping them get to the other side of the birth experience. It helps me to get through the other side of my pain.
Lauren: So you got the TN diagnosis. Did the muscle spasticity and all the chronic fatigue … has that persisted, as you have been seeking healing, simply because it's all part of the experience of having this diagnosis?
Kayla: Yeah, it's still here, even now.
I had to reteach myself how to talk. I had to reteach myself to formulate words, because of the clenching of the face.
It goes into the neck, and then the shoulders, and sometimes even into the breast area. This is where the movement of the jaw comes from, and there are days where I have to think about the words that I want to say. I have to really prep myself to speak. It’s hard to speak on spot.
Lauren: You're doing great! You wouldn't know, honestly. But this is part of the thing of also looking great — and being in pain, too. We're able to find coping mechanisms so that we can function as “abled”. It's almost like a performative able-ism. But it's also part of your way of not having to sit and just be in pain all day. It's also, like, here's how we move on.
Kayla: I love that you said performative, because that's a part of it, too, the invisible aspect of this condition. You do have to — in the rising up, and in the just taking on your day and just talking to people — you feel like you have to hide. Because not everyone is going to be compassionate and empathetic, that you're going through a condition and medical challenges. And you're in this mental space where you have to consider the kind of environment that you're in, and are they going to be receptive? Or maybe they're not. That's the thing. Speech, and teaching myself how to talk again, I've had to make sure that I enunciate my words, I take my time and speak; diction, pitch, tone, all of these things are part of the performative aspect of speaking. People would compliment me on my speaking abilities. But it got to the point where I felt like I was always presenting myself, instead of just being me. And that is frustrating, because I feel like I always had to be professional, turn it on. I just wanted to relax. That's still something that I'm navigating around.
Lauren: So did this also end your dance career? I mean, is this something that was getting enough in the way? It sounds like you were bedridden for months, while you were just seeking the diagnosis, let alone living with it, right? What then happened? I know now you're teaching GYROKINESISⓇ and doing breath work. So did you holistically look at your career and go, how can I move these skills into something else, because I need to do something. What was that journey like for you?
Kayla: I didn't stop dancing right away. After going on bedrest, I went to waitressing because I needed cash in order to afford all the specialists that I needed to work with. I went back to dance, actually, in the most extreme way; I performed on a cruise line. That was the very last thing that I did, performing. And it was everything that I said just before. They were not compassionate, they were not empathetic, they did not care. In fact, you are a liability if you have anything physical going on with you that would inhibit you from doing your work. So I had to hide it. I had to essentially lie, and say that I was okay when I wasn't. But I used the concepts of GYROKINESISⓇ — things like the fifth line energy, which is understanding polarities, power of opposition, being aware of space energetically, proprioception, weight shifting, weight bearance. I had to really become a dance anthropologist and a scientist of my body to understand how I could not only do the choreography in dance on this cruise line, but to interact with people on a day-to-day basis — because part of the job requirement was to interact with people. And then the culture of cruise line was completely 180 degrees away from what I needed, which was party life, drinking all the time. And so I felt very isolated and removed from the people that I worked with, because they didn't understand why I spent a lot of time to myself. They thought that I didn't like them. They thought all of these things, and they didn't understand why I spent a lot of time in meditation and prayer, instead of partying. So what I did was, I went to women … you and I spoke about women being change agents and facilitators. I went to the women that were not a part of the entertainment and the production side of the cruise line, but instead were the laborers, who work long hours, and didn't have support and felt like they needed to fall in to drinking, and to sex, and to this environment that just wanted to use them, and abuse them for labor — and then send them home.
And I started teaching breath work, yoga, and fitness on the cruise line, and talking to these women and telling them, “Hey, you don't have to give your body away. Your body’s sacred. Hold on to what you have, and save it for what you need.”
Following the cruise line, I started to become more serious about Beebodi. Beebodi is my holistic marketplace, the five things of health — mental, physical, emotional, spiritual, and financial — as a way to teach myself, as a way to recover, as a way to build my life holistically and bring others in. Sort of a public health initiative to teach others this way. So I volunteered at community health fairs, did lectures, and started my podcast called Beebodi Talks, where we cover all those topics there that I mentioned. And yeah, just continuing the journey.
Lauren: So you've turned this into a way in which you have flourished. But you've been able to do that, because you listen to your body, you took on the lessons your body was teaching you, you moved it into something else that would work for you. So I'm wondering as well, from an advocacy point-of-view, was it just you this whole time? Looking for diagnosis, going through all of this pain, did you have anyone who had your back, who acted as an advocate for you at any point along that path? Or was that something where you really just stepped up on your own and stepped into that advocacy space yourself?
Kayla: Truthfully, it was just me. I belong to a huge family. And I know, in times of despair, I can reach out to them and say, “Hey, pray for me, I’m not at my best.” But they didn't really understand the fullness of it all. And I can also be transparent and say that I think it was my mom who recognized that I didn't really have the support that I needed. Because it was hard for her to even accept the diagnosis. I would try to share things about what I was going through with my family, or going through with my loved ones, but they couldn't fully wrap their head around it. They couldn't really fully wrap their head around the things that I was describing about what I was going through, because they kept seeing me as being fine. And being okay, and making it through, and being strong. So that double life that I was living, I think the denial factor that loved ones are in is debilitating for the person who's in pain. Because I don't need you to deny the fact that I am going through something because you want me to be better. And you want me to be whole, and you want me to be healthy. I want that, too. But I also need you to be willing to accept that this is a real thing that's happening to me. And I need you to meet me there first. So it was a struggle to get people to meet me where I was. And so I sought the research and I sought communities that also were diagnosed with TN on my own. My mother did attend one group with me; it was very hard for her to be in that room. She just kept shaking her head, like, no, this is not my daughter. No, this is not what she's going through. No, this isn't it. I remember getting the trigeminal neuralgia magazine, and just reading through all the things. I was, like, yeah, I need to see this. I need this to be real and visible to me, so that I can connect with what's happening in my life. And I remember trying to share that with her, and she'd be, like, “Mmm, okay.”
Lauren: Yeah. Major denial. It's like, on some level, it’s not like a conscious thing. It's not like they're out to get us when they're in that kind of denial, but it also doesn't help, does it. So you really stepped into that space yourself, which I think is beautiful and it absolutely ties in directly to the work that you're doing now, and which we're going to talk about in a little bit. I'm wondering what a typical day is like for you, since you're using these holistic techniques, and you're using the GYROKINESISⓇ and the breath work to really manage your body and your pain. How are you balancing the demands of work and life, as you work around potential flares and your body's symptoms?
Kayla: One thing I can say I can count on is getting a good night's rest. When I lay my head down on that pillow, it is my saving grace. The body heals itself in sleep. And so I'm able to restore energy that way. As much as I can, I try to get a good solid eight hours — six at the very least, five is pushing it but sometimes that's what it is. I am very active in my community; I probably belong to 10 community networks that I'm active in. I work full-time as a consultant. I also have my own company, Creative and Equal Opportunities Incorporated, that provides resources and information to artists, as well as this health and wellness platform. And I'm a creative and an artist. So I think being a creative and an artist, those things never turn off in my mental space, to be honest. But it's also inspiring.
So I try to stay inspired, motivated, passionate and in love with my work as much as possible so that it doesn't feel so taxing.
It can be frustrating. I probably cry at least twice a day. But I shed tears to help me to water those seeds of all the things that I am committed to. And I always feel much better when I shed tears. I pray a lot. Outwardly. Audible prayers. I go into praise and worship by listening to songs, singing very loudly. Because I find that sound therapy, not only hearing but me actually bringing the sound up through my own body helps with … I hate to say it, but suppress the pain. Because the pain rises up from my breast area to my jaw. When I sing, when I am vocal, it kind of brings it back down. And that's what I need it to be; I need it to come to a central part of my body.
Lauren: That’s not suppressing, that’s just moving it, isn't it. We don't have to think about that as suppressing. No. We're tapping into our strengths here.
Kayla: Yeah, I call my friends, my best friends, when I need to; they check on me. That's helpful. My grandmother checks on me, too. Physical massage … I remember having a day where I realized that I was my own healer. So massaging is a huge part of my day-to-day. I use CBD products. I'm a proponent of that. I'm also a proponent of cannabis. When I realized that these doctors were not going to be advocates for me, and probably not going to be the answers, I started to travel. I went to Jamaica, I went to Trinidad, I went to Hawaii. I went to places that were rich in nature, rich in vegetation, rich in holistic living. In places where people were taking it easy and valued that taking it easy as part of the lifestyle — because I knew that's what I needed. American Western culture is brutal to anyone, especially anyone with a chronic pain condition. So I needed to experience life other than what I was used to, and find a way to integrate that into my day-to-day. And I came across so many breast cancer warriors, other kinds of cancer warriors, that use cannabis as a part of their healing mechanisms. And I finally stopped feeling like I needed to hide that, and feeling like I was a rebel or vigilante or all these things that are false about people who use cannabis for medicinal purposes … and embrace that, because cannabis has helped me so much. It still requires me to do a lot of the work — physical, spiritual, all the social, emotional as well. Cannabis is a whole body experience. And that's what I needed, a proponent that would allow me to see where I can move energetically the pain that I'm feeling in my body.
Lauren: I really love that. I love that you’re talking about interconnectedness there as well. I'm wondering, just to dig back into some of these experiences you've had of bias in the medical system … do you think that if you presented differently, if you perhaps had been a white woman going to some of these doctors, maybe if you'd been male going to some of these doctors, that your pain might have been taken more seriously from the get-go?
Kayla: I don't know. Because I'm not a white woman. And I'm not a white man. I don't know. That's the thing about being a person of color. And being a person without the privilege. It's counterintuitive for you to actually know what their experience is like, unless you are actually them. I'm going to say no. Because I'm talking to you, and you're a white woman, and you've had the same experience. I would say it's really just about access to money. Because if I had more money, I could probably dish it out and see more and more specialists, and together we could figure this thing out. I think that that's really what it comes down to.
Lauren: Well, with some of these socio-economic issues, we know that some of them come down to race, too, right. I'm wondering if you think that these kinds of biases in the healthcare system … be they based on gender, race, socioeconomic status, etc … do you think that these concepts themselves are a public health crisis?
Kayla: Yes, they are. As I mentioned earlier about the glow with women of color, I think physicians are just not honest with the fact that they don't know how to treat certain things, and how to treat certain things as it pertains to Black and brown people, females, binary, transgender. If you don't know, the last thing a physician is going to tell you is, “I don't know.”
They're not going to be honest; they’re just going to keep referring you out to someone else that could possibly help you. But it's still shooting in the dark.
So that is a part of the crisis. As well, as we know, they are in partnership with the pharmaceutical companies, and it's much easier to just send them off to a random medication that could potentially help them, or not at all, instead of accepting as the Europeans do … European culture … complementary care, alternative care, holistic care. They actually embrace a walk in nature, movement therapy, dance therapy, music therapy, going to spend time with a monk as a viable option for healthcare. We don't do that here in the US. We don't do that at all. We would rather lie, collect your money, tell you it's you. Or say, “Sorry, you can't afford it. I don't know what to tell ya.” Than offer them something that really could work for them. So I think we need to change the spectrum of what we're doing here, what we're offering people. And so we know that sure, Black and brown individuals, women of color, minorities, etc., if you're on the very minimal health care … which I am … I'm now finally getting to the point where I could probably start to afford my own health care. And again, that goes back to, it's hard for me to say because i don't know, I'm not in that space. My mom, I was able to go to a doctor's visit with her where she had real health insurance, not health care for all, not Medicare. Where my experience that probably took 30 days to be referred and to see one doctor, happened for her in five minutes. Apparently they had specialists in their back office. Apparently they had all these people; she just needed to wait five minutes and go see that person and get her blood drawn, and go see that person and go take the test, and go see that person and get everything done in a day — that took me 30 days to do. That's only because I was, again, my own advocate, professional and followed up, and punched through it. It took me several calls, calling people day in and day out. “Did you get my message? Did you get my calls?” It's ridiculous.
Lauren: In the meantime, you're living in pain, too. It's like it becomes the full-time job.
Kayla: It's a full-time … that’s exactly what it is, Lauren! I have stacks and heaps of folders. I'm like, oh, my God, who do I work for? Do I work for the system? And the shame, and that guilt of then having to go apply for food stamps, because I'm unemployed. And I need to eat. And applying for assistance and all of these things that, again, minorities are shamed for doing, like … Oh, you just need to not have children; you can't afford them. You just need to not have issues; you can't afford it. How do you tell someone that when that's a part of their lived experience that's being fueled by these biases, and being fueled by the inequities of health care? It's absolutely a crisis.
Lauren: Well, I mean, this is a lot of the thing that is wrong with the US healthcare system, right. But is there any way that we're getting it right, do you think? You don't have to have an answer to this! I agree with you that there's a lot of negative stuff. But I'm wondering, are there any positives that maybe we have the the advantage on Europeans, for example, in any way?
Kayla: I will say the positive these days is the fact that we're seeing more small businesses erupt. And we can now start to explore options that are out there, like mobile health services, access to technology. I do see potential in the future for things getting better for us. We just need to have the access.
Lauren: Yes, absolutely. Like tackling access from a small business point-of-view, I really like that you're making that point. Because it is about taking power away from larger corporations, pharmaceutical companies, massive hospitals and putting it back into people's hands, isn't it? Let's talk about your advocacy work. Let's talk about your businesses. You talked about how you organically came into your GYROKINESISⓇ business and Beebodi. But tell us a little bit more about how you're helping others through both your community work and your work in this wellness and holistic care space?
Kayla: Sure. So I will start with my work as a doula. It was actually a man that made the suggestion to me that I should become a doula. I had no idea what it was. And when I found out, I realized that women of color didn't realize that they had this entitlement to support.
Because entitlement and minority don't go together. Support and minority don't go together.
But when I realized that they did, and they needed to know that, that became my charge, to at least let as many mothers of color … and I'm not just talking about Black women, that's Latinos, Latinas, that's Asian women, broad spectrum … that they deserve support. And in the birthing process before and after, that they should consider getting a doula. So I work with an organization called March of Dimes; they tackle the inequities that are directly in the hospital experience and in the system, where mothers are left out. They're left out in terms of receiving the information that they need from doctors about their choices in their birth care plan, and the things that they plan to do with mothers when they're in their labor experience and thereafter. And their information, how it's being disseminated. We all know that we sign HIPAA forms and sometimes women don't even know what they're signing, they're agreeing to. And they feel like they're in this space where if they want to contest, they're not allowed to do that. So March of Dimes does that. And then I'm certified with ProDoula. That's my doula work. With the Beebodi Marketplace, as I mentioned, I offer quite a bit of volunteer work in the community in the Washington, DC metropolitan area. Now, it’s existing on a virtual space and virtual platform. So now I've been able to extend that to conferences, and webinars, and just share things like workspace wellness. Now living with pain, again, this is going back to that invisible aspect … if you're living with any sort of pain or chronic condition, it's not welcomed in the workspace. Be it corporate or not, it's just not welcomed. Because it's deemed inappropriate for the workspace. You need to go deal with that at home, you need to take care of that before you come in here. You need to not carry it. But people don't realize that it's spilling over into your work productivity. And maybe why you aren't seeing the results that you would like to from your employees is because they are depressed, is because they aren't getting the support that they need. And maybe it's because of the inequities of the health care system, and they need an alternative. So how can we create something that is a supportive ecosystem within the work environment, so that you can see the results that you're looking for. I talk a lot about that, workplace wellness, and how executive directors and heads can create more trust, building activities, can fuel in holistic building blocks within their team building as a part of their daily meetings, or their weekly meetings, and it not be taboo. And then also with the individual, to help them to identify what are those triggers, indicators that are happening to you without you realizing, to make you procrastinate, to make you feel less motivated, and maybe even make you feel isolated? And that you're not excellent, even if you are — because of your health. I have a podcast called the Beebodi Talks podcast. I touch on a bunch of things, but lately, it's really been pressing in with positive affirmations … I am, I can, I have, I will, I know, it shall be. These are ways that we can start our day to really fuel everything that is in us, which is greatness. And these day-to-day responsibilities and requirements and these checklists can be so demanding, to the point where you don't feel like you have room for self-care. There's tons of things out there for self-care, kits you can buy. But it's still about blocking the time to actually do it. And I try to help people, “Remember, take a break, get up from your chair, stretch, go drink water, breathe.”
Lauren: I hope that everyone who's listening is taking that pause right now, too — unless you're driving, don't pause, keep driving!
Kayla: I actually have a podcast while driving! There's something called walking meditation. I want people to embrace driving meditation — where you're not driving defensively or offensively, you're just driving mindfully. Let people go past you and honk the horns. I want you to find a pace, a rhythm, a pattern that works for you. I noticed that when I went back to the East Coast, from being on the West Coast — because I would cruise all the time. And people were like, “What are you doing?!” The aggression! And I’m, like, it's okay, I have found my pace, my pattern and my rhythm and I'm sticking to it. So the same way that you can walk and meditate, you can drive and meditate, too. Notice if you are stamping your feet on the gas to drive and surge, being in a rush mode all the time. Or are you actually taking in your environment? Are you noticing the nature around you? Are you noticing the pedestrians? Can you say that you can remember that someone was wearing a hat that day? Or were you so absorbed in yourself, in your own mind, in your checklist, in your phone calls, in your space, that you're not able to participate in the world around you.
Lauren: Driving is actually a great example for that, I think too, because you have to be aware. Because it's a safety issue not to be. And that concept of being able to be aware enough of oneself, and find the center to then expand that center and find that awareness outside of yourself as well. I wish more people would practice it, especially on the road. It would probably help reduce accidents, wouldn't it?
Kayla: I hope so.
Lauren: You never know. So I love … and this is what so frequently happens, especially with people who are on the show, is that we go through our own really redemptive experiences that can start out terribly, and they can cause us great pain and debilitate our bodies. And yet, we find ways to cope. And then we want to share it with other people. And that's exactly what you've done. You've taken that strength that you found within yourself, and you've shared it with other people. And in sharing it, it has also fed your strength, too. And I just love that the narrative I'm hearing is one of … well, if we're more in community, if we're thinking about other people, if we're helping other people, we'll also help ourselves.
Kayla: But helping, I will say this, too … as a part of my escape from pain, I’ve had to make sure that I balance it well.
Kayla: Boundaries. Not doing too much to the point where I'm validating … I'm not doing it for validation, I should say. But I'm validating strength by helping others and being a part of community and working with other people and all of that. But also taking away from what I need to do to restore myself, because I still am in pain. Striking a balance is key.
Lauren: Yeah, absolutely. And I mean, we talked about that a little bit earlier, in terms of this working life that we're expected to have here. I love that you went and traveled and went to places where, as you say, part of the way of life is a certain ease. And cultivating that within ourselves every day. It's part of the reason that we hear a lot about meditation and yoga, people trying to do it first thing in the morning — because it's about finding that center before you give yourself to the world, isn't it. And I really love that you're living that and that you're teaching other people that as well.
And you know, I have days where I fall out of my rhythm.
Like today, I planned to get up, do some breath work, do some stretch. But inspiration took over and I did something else. But I would say, just find a way to do it at least at some point. Insert it, don't forget it. Don't let it be an afterthought. Or don't let it be just a thought. Because sometimes we can start to live in this cognitive reality, where you’re, like, oh, I thought about yoga … that sounds really great … I thought about taking time for myself. And sometimes the thought can bring us relief, but the actual doing we neglect, and we have to.
Lauren: Hmm, I love that you say that, actually, because I'm definitely guilty of that. And I think the next step is the action. You talked about procrastinating earlier … why do we do that? Getting to the root of that and actually taking the action … yeah, absolutely. I'm totally on board with this message. I love it. So, I've got a couple of Top Three lists for you. And I wondered if, first of all, you could offer some tips for others who are maybe living a similar experience. Maybe they're living with chronic pain or a chronic condition, and really struggling to figure out what's going to work for them, to find their center … to understand the world around them and try to find their feet. What would you offer to fellow Spoonies who are living with an invisible condition?
Kayla: Affirm yourself like crazy. Wildest thoughts, dreams, imaginations that exist as a part of your being, and as a part of your experience … affirm that. Get rid of the shame and the guilt that you have been living with, and get rid of it on a daily basis. You do not have to apologize for the fact that you're going through something. The world that we live in … we can't expect them to be supportive. They need to just be aware that just as our skin color differs, our condition of life differs, too. So affirm yourself like crazy, and let that be real. The second thing I would say is nutrition. Changing my diet, taking in more water foods has helped with reducing inflammation in my life. It's taken a while to eliminate things that I love and I enjoy, but I realize it’s worth the sacrifice. Because the body is brilliant, but it's a sponge; it will take in what you give it. And if you're having a guilt shame day where you're falling into depression and you're spiraling, and you just say, well, I just need this, I deserve it, I've been through so much … and you keep validating that malnutrition as a reason for why you're doing it. Your experiences, the reason why you have malnutrition, you'll suffer. Don't add to your suffering. Get better at that. Whatever that is for you.
I'm not going to tell you to become vegan, keto, Paleo. Listen to your body, consult with a trusted physician.
I would recommend someone holistic; I would recommend naturopathy. I would recommend sitting down with an herbalist and talking to them. I would recommend learning your blood type. I would recommend, if you haven't already, going through your family tree and finding your lineage and your heritage. If it's Germanic, if it's Slavic, if it's from Africa, if it's from Asia … go back and find what their traditional foods were, and you may need to start to integrate that. This American nutrition is horrible. It is not a viable path and option at all. Because it's a melting pot. It's a meld of things that our ancestors have brought over to this land. And it's usually fried, dyed, and laid to the side. And that includes my brown and Black women, too. We did not come from slavery, we came from Africa. And the traditional food pyramid actually does not include meat at all. Just so that you know. It is a highly fruit- and vegetable-based diet. Again, as I mentioned earlier, foods that are high content water, in hydration. Go back to that.
Lauren: You’re making me want to eat a watermelon right now!
Kayla: I’m so glad you brought that up! A friend of mine, she calls herself The Melon Romantic. I'm going to plug her. She's all about juicing. You can use any and everything; you can use grapes, melons, all these fruits and vegetables. One of my favorite recipes is cabbage, cucumber, any choice of apple, and then one other fruit. So with the Beebodi Marketplace, I call it ‘tasting the rainbow'. So ideally, your diet should include all things that have color. Your blues and purples are good for your immune system and building antioxidants. Your reds and oranges are great for betacarotene for your eyes and for building up your blood cell content. Your whites and browns, legumes … I forget what that’s good for! You’ve got to look at my chart; check it out!
Lauren: We'll definitely link to it on the website for the episode.
Kayla: Yes, it’s there. Your food should have color. And your food should have real rich tannin color, too. You know, your typical potatoes, your french fries … there’s no color in it. So just keep that in mind. And then the last thing apart from nutrition and affirming yourself, I would say, for pain, is joy. Happiness, laughter … you need to become radical about joy. And believe it. You're not going to believe it at first; you have to force yourself. That’s what I've had to do. Because everything about life is going to feed you things that could make you feel like you need to be depressed … you need to just give up, you need to just throw in the towel. You don't belong there. What are you doing? No! Be radical about your joy. Make yourself smile. Make yourself feel good, and put yourself in places that also support that, too.
Lauren: That is so beautiful. I don't think it gets much better than that. I love it. You're inspiring me; it's gonna get me on a really nice path for today. So, last Top Three list … speaking of joy. Top Three Things that give you unbridled joy. So, things that you're unwilling to compromise on. Because I know that obviously you've adjusted your life around your diagnosis. So these can be indulgences, maybe comfort activities. But what are three things that you turn to when you need to light yourself up?
Kayla: Oh, live music. Sound therapy is so key for pain conditions. Frequency is a thing. We always hear “No bad vibes here, only good vibes and energy!” What is energy? Energy is frequency. These are wave patterns. And the body absorbs that. It's a cellular experience. That is how we have energy. We've got organs, we've got bones — the makeup that helps us to navigate through. So live music has helped me so much, to make me feel alive. What else? I think going back to laughter, too. That's also a cellular experience.
When I laugh, I'm taken out of … not escaping … but I am taken out of my pain experience.
And it can be contagious, laughter. And infectious, laughter. And I want and need more of it. Good comedy, too. Not dry, sarcastic, rude.
Lauren: Yeah, not something crass. But something that's actually funny because it's true.
Kayla: Yeah. And what I'm not willing to compromise on?
Lauren: That gives you joy.
Kayla: Joy. Children.
Lauren: Yeah. Especially as someone who's a doula.
Kayla: I'm an educator, going back to honesty. Children are brutally honest. If you spend time with kids, they have that kind of innocence that is unapologetic. And I think it brings you back to the simple things of life when you're around kids. At least for me.
Lauren: Yeah, absolutely. I think that's really lovely. So what is your ask for listeners today? What can they do to support you and your work as you move into the future?
Kayla: There's a quote, that's been said … ‘when someone shows you who they are the first time, believe them.’ That's something that I'm still learning. And I would like for everyone to embrace that. When you hear someone say that they're going through something — hardship experience — try to be aware of that when you are in their space. And also ask them how you can support them. Be honest, and say, "I would like to learn more about what it is that you just shared with me, because I'm not familiar. Help me to understand.” I think people shy away from things that they don't get. And they just say, “Oh, I'm sorry to hear that.” Or, “That’s unfortunate.” Or, “Oh, my condolences.” Or, “That sucks." Just these kind of passive … I don't know …
Lauren: It’s a passive lack of responsibility, too, though. It's like not getting involved.
Kayla: Not getting involved. Someone has called it … what I like to say, too … willful ignorance. Like, you've decided because it doesn't affect you, you don't want to know and you don't want to care. That's not responsible, as you said; it's not responsible at all. We've got to do better. It's gonna differ from person to person. Active listening.
Lauren: Oh, yes.
Kayla: There it is. Active listening.
Lauren: Really engage. I love that. So, what is next for you, Kayla, in your advocacy and wellness journey?
Kayla: Well, I plan to become more active in my advocacy for TN by getting the word out there. October is Trigeminal Neuralgia Awareness Month, and the color is teal.
So any way that I can unapologetically let the world know that this is not an invisible, made-up condition, but that people are really suffering from chronic facial pain, and that we do need to find answers.
I will continue to do that, and encourage people to donate to the foundation in order to help us find solutions. For Beebodi and the Beebodi Marketplace, I will persist with financial wellness in my own coming to financial literacy. To help us to understand that when it comes to finances, we don't have to blend in to the current of haste that's going on around us. Especially with the pandemic. But to really find a rhythm that works for us and who we are as people, and the obstacles such as chronic pain, and health conditions that are part of that experience and money-making.
Lauren: And remind everyone where they can find you again.
Kayla: Sure, you can find me at beebodi.blogspot.com. I'm also on Instagram @beebodi, as well as on iTunes for my podcast, entitled Beebodi Talks.
Lauren: That’s awesome. And I will include all of that information with links on the website for the episode. Is there anything else you'd like to share with everyone today, Kayla? You’ve opened up to us so beautifully, and I’m just so honored to have been present for this conversation.
Kayla: I’m so happy to have come in contact with this podcast and you, Lauren, because you have given me space to crack this open. So I just want to say thank you. I’ve shared so much. And I'm just grateful that this space is here, so people like myself can do that. Thank you.
Lauren: Thank you so much. And thank you for engaging with us and showing us what active listening looks like. That thing that we need to cultivate more is exactly what we just did! So I think living by example is something that you have really mastered here. And you're really just such a wonderful, wonderful role model to everyone tuning in today. So thank you so much for giving us your time, being present here, sharing your energies with us. Wow, what a wonderful person to have met. Thank you so much, Kayla.
Kayla: Oh, you know what? In the Beebodi Marketplace, we encourage you to treat, support and invigorate your human body.
Lauren: Hmm. I love that. Yes, because that's what we need to be doing, especially if we have a chronic illness, right guys? Yeah, absolutely. Well, Kayla, what a joy. What an honor. Thank you so much. And guys, go check out Beebodi. Check out all the work that Kayla is doing. She's an incredible advocate in the community and you should connect with her.