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Episode 123: Don't Judge A Book By Its Cover: Shayla Swint on Life with EDS
Shayla Swint is a 25-year-old college grad from Houston, Texas. Like the old adage, "Don't judge a book by its cover," Shayla is so much more than what we can see…she lives with connective tissue disorder Ehlers-Danlos Syndrome (EDS), hypermobile type. She's survived over 15 surgeries thus far, and lives in an almost-constant state of pain and anxiety due to the condition. When she says that "her body's trying not to fall apart," it almost seems an understatement. And yet…she manages to keep going. In this interview, she tells us her story.
Shayla on Instagram
Lara Bloom on / UP /
Brendan Langley's #MyCauseMyCleats for EDS, 2018
Tune in as Shayla shares:
that she suffered from numerous injuries during physical activity in childhood, and her hypermobility was also present at this early stage of development
that early on, her orthopedist suspected she had EDS — but was unable to provide the genetic testing to confirm it
that she was finally diagnosed with hypermobile EDS a decade later
that between the ages of 13-18, she had multiple surgeries — and didn't get her official diagnosis until 2 years ago, at the age of 23
why her diagnosis was validating
that one rheumatologist told her, "Black people don't get EDS" — and her response was to lose all trust in the system for a time
the importance of mental health support — and that it was never recommended as part of her diagnosis or treatment plan…but, thankfully, by her mother
that she's been exploring a vegan diet in order to reduce inflammation
that her mom has chronic migraine — and understands what it's like to advocate and live in chronic pain
how she has disclosed and managed her pain in work environments — and where she's struggled to achieve easy accommodations (even when she presented solutions)
how triggering it can be to pursue legal action in disability cases — and why so many individuals don't do so
why remote work during COVID has been so much more comfortable for her
the difficulties she had receiving disability accommodation during college, and why her disability being invisible made that fight even harder
how her race has impacted her treatment in the medical system
the impact of community on her experience, especially as a WOC
why change in our healthcare system is so desperately necessary
Lauren: All right guys, thank you so much for joining us. I am here today with Shayla Swint. Shayla lives with Ehlers-Danlos Syndrome. We've talked about it on the show before, but I'm excited to have her on to talk about her experience. Shayla, thank you so much for joining us on the show today.
Shayla: Thank you so much for having me. I'm so excited to talk today.
Lauren: Absolutely. So I love to start at the beginning of these stories of diagnosis and illness. Can you tell us when and how you first realized that you were sick, and how you've managed your health since then?
Shayla: Okay, so I think my first memory where I knew something just was different or wasn't right … I was in gymnastics, and I was in cheerleading. And for people who are familiar with EDS, it's basically a connective tissue disorder. So it affects the joints. I just remember, I would always get these little petty injuries. But I also remember that my gym coaches would tell my mom and dad, "Oh my gosh, she is so flexible. She is amazing. She can do anything we ask her to do, there is no problem. She's more flexible than all the other children." And so I would say for about two years, it was fine. But then I can remember personally … I'm, like, my body just hurts. And I don't know, I was 7 or 8 so I wasn't sure if that was normal or not. And I honestly didn't say anything to anybody because none of my other friends were saying their body hurts.
Lauren: That's a narrative we hear, that people aren't talking about it, because no one else is/
Shayla: I just had no clue. I had no idea. I can remember waking up and thinking, oh, this hurts, that hurts. I remember when I was doing all these amazing stretches and being flexible that I felt a lot of discomfort. But then again, nobody else was saying that it hurt. And as a child hearing, "Oh, she's so good" … it made me feel good in a way. So I didn't say much. But my mom, she eventually pulled me because she just didn't like all the petty injuries. But I do remember at 13, that was the age … I was playing with my brother in the house, what we're not supposed to be doing. And we were doing flips off of the couch.
And when I landed, my shoulder completely came out — it was dislocated completely.
So long story short, we ended up going to … I'm from Atlanta, so Children's Orthopedics. And that's where I got a diagnosis from Dr. Bush; he kind of suspected something was wrong, because he said, "She's just too flexible. And her limbs, the range is extraordinary." That was the first time we had heard what Ehlers-Danlos was. But of course, he couldn't give me a diagnosis; from him, it was just suspicion.
Lauren: That's so interesting, because often when I hear these stories about EDS, there's a huge span of time between onset of symptoms and diagnosis. Obviously you had several years there, from being 7 or 8 to being 13 and dislocating your shoulder. But one of the first doctors who you saw had an early suspicion that this was EDS. That was kind of miraculous. It's almost like a lucky thing that you had an injury that required you to see an orthopedist.
Shayla: It is. And of course we had never heard of it. My mom started doing all this research. And then we saw that it was hereditary. But, like you said, it's years before you get a diagnosis. I'm sure we'll get into my official diagnosis, but it was a long journey, I can guarantee you that.
Lauren: Absolutely. We talked to Lara Bloom last year on the show, who runs the Ehlers-Danlos Society. And she told us there's no such thing as an Ehlers-Danlos specialist, right. I know there are doctors who are familiar with it. But because there's no such doctor that you can actually seek out, how did you end up finding a practitioner who could treat you and getting a diagnosis?
Shayla: Okay, so that was 13. So let's say between 13 and 18, I had multiple surgeries — knee surgeries, shoulder surgeries. During all this time, I was still just going back and forth to Dr. Bush; I actually stayed with him till 21 because that's when you age out of peds. I didn't get an official diagnosis until I was 23. Like you said, there wasn't a test that they took. I went to Emory Genetics, and that's where I saw a specialist, and he said, "I believe it's Ehlers-Danlos hypermobility. There's no blood test or anything that we could run or give you, but from my opinion, what I've seen from other people, I can say that's what I believe that it is."
Lauren: Wow. So what was it like getting that diagnosis? Was it validating, or did it feel a bit like you'd had the rug pulled out from under you?
Shayla: Oh, it was very validating.
I cried once I got home, back to the car. Because it was just years of people saying, "Oh, there's nothing wrong with you, you're fine."
And then I went to a rheumatologist, and she told me, "Well, Black people, they don't get EDS."
Shayla: Yes! So that was hard, because I know what I feel and how I wake up every day in some kind of chronic pain.
Lauren: This is racism and gaslighting, together, from this person. That is pretty horrible.
Shayla: Yes! She didn't even give me a chance to explain who I was, and my story. She came in and said, "Yes, I reviewed your chart and your history, and I don't think it's EDS, and I don't think it's anything with pain, honestly. I just feel like you should go see a therapist."
Lauren: She also told you you weren't in pain. Fantastic.
Shayla: Yes. Right. Exactly. Just, "I feel like you should seek therapy and just try to get a hold on what's going on mentally." And so with that, I can tell you, I shut down. I was just, like, I'm not going back to any appointments. I'm not going back to any doctor. I'll just try to manage my pain best I can.
Lauren: You wonder where a mistrust of the medical system comes from when anyone experiences this kind of thing. But when this is something that's so common in the Black community, too, to not believe your pain and really disenfranchise you.
Shayla: Right, immediately. And not even give me a chance to tell my story and what I go through every day. That was one of the worst appointments. I've never had a doctor say, "Well, why are you here? And can you tell me a little about what's going on?" She just had this preconceived notion: Black people don't get it, so I need to get on to the next appointment for the day. That was about two years before I went to the doctor who told me, "Yeah, it's definitely hypermobility EDS. I can see it all over." So like you said, it was very validating, because I know. It wasn't in my head. I know.
Lauren: Absolutely. So what about in terms of maintaining your health? You've got this diagnosis, you know that you have a connective tissue disorder. You've had tons of surgeries. How are you maintaining your body's health, knowing that you have this diagnosis that you're gonna have to work with for the rest of your life?
Shayla: First thing, I do try to keep my mental state as stable as possible. I do have a therapist that I go to and meet with, because I feel like mental health is really something important with a chronic illness.
Because it's going to be here forever. It's chronic. It's not going away.
Lauren: Was that something that was offered to you right away as well? Or was that something that you saw individually? Because it's one of those things that we know, — because we're chronically ill — about the mind/body connection. But often, because of holdups with health insurance or doctors who don't get the holistic point-of-view, it takes us as patients saying, "Hey, I'm gonna need to talk to a therapist, because this is life-changing." Was this something that you did yourself, or was it something that someone suggested?
Shayla: My mom suggested it, but nobody in healthcare suggested it. Let's go back to 13. And then that gap, where I'm just having all these surgeries. That's school age, I'm missing school all the time, and people were, like, "Shayla, what's wrong with you? You're always having surgery." My mom, she noticed, and I have to really thank her for that; she realized … okay, this is going to be something chronic for her. Let me do something now so she's able to cope with this. So she put me in therapy. The therapist was great; I'm with her to this day. And so that really helped me be able to cope. What's most important for me is just making sure my mind … I'm not going to get down on myself, because it's easy to just get down on yourself and be, like, why me? Why do I have to go through this? So that's one of the main things. I do have I like to say maintenance meds — pain medication and other medications I'm on for the co-morbid conditions. I try to do my own kind of physical therapy at home, and low-impact workouts, just to build and help the muscle tissue. Some people are, like, "You just need to work out and you'll be fine." But for me, it doesn't take my pain away. Nothing takes my pain away. Even when I was in physical therapy for months, it wasn't taking my pain away. It was just making it a more manageable level so I can get out of bed and do what I need to do every day. I'm also trying to see if I want to make the transition to being vegan. Because I heard that can help with chronic pain and inflammation in the body. So I've been researching that and trying to cut meat out here and there — like a day here and a day there — just to see how I feel.
Lauren: It sounds like it's a very holistic approach. Aside from those maintenance meds, this is a holistic approach to your health.
Shayla: Yes, that's exactly what it is. And that's kind of the way I want to go. I'm not gonna sit here and down anybody who takes medication. Because, like I said, I have mine, and if I have to take a pain pill to get through my day, I'm going to do it. But I definitely have been researching and looking at other holistic ways to cope, and see what helps me.
Lauren: That's awesome. It sounds like your mom was an advocate for you pretty early on, especially with helping you with the mental health side of this diagnosis. So how has that impacted your relationship? Getting this kind of lifelong life-changing diagnosis, your mom seeing that the entire time you were growing up, and acting as a caregiver for you in many ways. How has that changed your relationship with her? Has it given you an opportunity to be closer in some ways?
Shayla: Yes, we are. We've drawn very close because with the surgeries, and she's taking off work and being the caretaker and giver. But she also suffers; she's a chronic migraine sufferer, so she understands being in that state of chronic pain. But now that I'm older, and I've realized, wow, so Mommy, you were in chronic pain, but you are here being my caregiver.
I just have a whole new respect, and I see my mom in a different light. She's definitely my advocate.
I'm just at the point now, at 25, where I can go to doctors' appointments and say, "Well, this is what's wrong with me. And this is what I'm feeling and experiencing every day." Especially after that appointment with the other doctor, I just kind of shut down, and I didn't want to talk to anybody. That was the first time my mom missed an appointment because she had to work that day. Of course, that would happen, the one time that she's not there! But it's definitely brought us closer. We both understand each other, because she knows what it's like every day to wake up in some sort of pain. As do I. People call us twins, because we can basically read one other's minds. But she is definitely my person.
Lauren: That's so lovely. Again, this is a common story we hear, for the most part, especially when you're looking at a diagnosis that starts when you're a kid, when you're in pediatrics. Patients and their families getting closer because of it. And that's kind of a beautiful thing. That's where it's that blessing in disguise. Especially because your mom could literally understand chronic pain.
Shayla: Yes. And I think that's what makes it so special and so unique, because she truly understands.
Lauren: So what is a typical day looking like for you? How are you balancing the demands of work and life as you work around your body's needs and mitigating potential symptoms?
Shayla: I would definitely say it's a struggle, it really is. I'm a recent college grad; I graduated back in May.
Lauren: Congratulations!
Shayla: Thank you! So that was definitely a challenge in itself, finishing school. Transitioning into work life, it's just making sure that I'm not overdoing it. And learning how to say, Shayla, you're going to have to take a day. If you don't take a day, you're going to be forced to take five days. So it's important. I'm learning I have to listen to my body very early on, because I've been that person … push, push, push, push, push. And then I have to go to the hospital to get an IV drip for pain management, because I haven't listened. So definitely I try to make sure that I'm doing what I can before my body forces me to sit down.
Lauren: Are you finding that employers are open to your needs, and your potential adjustments? Are you being open with them about your diagnosis?
Shayla: I worked at T Mobile. That's past tense. I really enjoyed working at that job, I really did. But I needed to ask if I could have a stool, on the floor, if I'm behind the counter, or even when we don't have customers in the store, if I could have a stool to sit down on so I don't get completely exhausted or fatigued. I didn't think it would be an issue, because I go on AT&T, I go on Sprint, I go on Verizon — and their employees, they always have stools behind the counter. So they told me, "Well, that's not really the look we're going for in our store. So, if you need to just take more breaks, you can take more breaks. But make sure you clock out." I just really didn't understand why a stool, and me still doing my job and still performing … why that would be an issue. Especially when it's for health reasons.
I'm not sitting down because I don't want to stand up. If I could stand up for my whole shift, then I would do it and it'd be fine.
Especially with my knee surgeries and everything, sometimes I just have to sit down; that way, I just don't feel that fatigue. So that was one employer where I can definitely say they were not supportive at all.
Lauren: I'm going to call disability discrimination on them right there.
Shayla: My mom told me to! And I was just, like, you know what, don't worry about it. Because it just made me upset. That's another pet peeve of mine … I want to learn how to be more of an advocate for myself, but sometimes you just get so frustrated, and you're just, like, you know, whatever. So they were definitely the job that didn't want to work with me at all.
Lauren: And you told them you had a disability?
Shayla: Oh yes! Emails …
Lauren: They didn't care.
Lauren: But that they also wanted you to clock out for extra breaks is them actively seeking to avoid accommodations for your disability. If you're making people stand on the floor, you are leaving out 25% of the population who can't do that all day. That's really small-minded thinking,
Shayla: And another issue … employees had to go to the back door. I have a handicap placard, and I said, "Well, you know, so I don't have to walk around the building and put extra steps on my body, can I just walk in the front door so I can mitigate my symptoms?" And that was an issue, too. It was a lot of things with T-Mobile.
Lauren: This is another reason why a lot of people don't pursue legal action — it's so triggering, isn't it, to relive those experiences.
Shayla: And just trying to convince somebody … I'm not doing this for any kind of vanity reasons. I really need this thing.
Lauren: And employers are not getting enough suits against them, and so they don't see the need to make these adjustments. And so the vicious cycle continues.
Shayla: Right, and they think it's okay, and they just continue to treat, like you said, 25% of the population, in this manner. Yes, it's very tricky. My mom said, "We need to do something." I'm, like, "Mommy, I don't even want to deal with it." I'm in an education now; I work with kindergartners. And we're virtual. So I'm able to be really great with work/life balance, because I'm at home. Right now, I have absolutely no complaints. I'm so, so thankful for where I am right now in my profession.
Lauren: Absolutely. That goes to show, virtual opportunities also make us a lot more comfortable when we're dealing with different levels of physical ability. Having that kind of flexibility, as an employer, is super important. So, aside from these situations where you've been brazenly ignored by employers, or that doctor who told you, "Black people can't have EDS" … have you been in other situations where you've been confronted by people who literally couldn't see that you have a disability — because you weren't walking around with a walker or a wheelchair. And you had to justify or validate the existence of your diagnosis to them because they simply couldn't see it? What are those situations like for you?
Shayla: One situation when I was in school, I had a professor … every semester I would go through all the processes I needed to with disability, so my absences would be covered. I had this one professor … and this was a very hard semester, for me; my pain was at 2000 every day, and I was still trying to make it and go to class and do what I needed to do to be a successful student. But this particular semester, this one month, I missed, I would say, maybe 15 days that entire month. Like I said, I had my paperwork on file, doctors' notes and everything to say she gets days where she can miss class with no penalty. And so when I came back to campus, to go talk to the professor, I said, "I've missed a few days, I just wanted to get caught up. Let me know what your expectation is for me for my assignments."
And the professor looked at me and said, "Well, you come in here every day with your nice clothes and your makeup and your hair done. I don't like when people try to pull one over on me."
And so I said, "Okay," walked out, went to the bathroom and cried, regained my composure. And I went back in there. and I had an article that my friend did for me about invisible illnesses and chronic illness. I sent it to him, and I said, "When you get a chance, I would like for you to read this article. You and a lot of people in society have to stop looking at people and their outside appearances, and assume that because they're not in a wheelchair, or you don't have a cane or walker, that you can't be a person with a disability. I have nothing to gain from missing 15 of your classes, not coming to class. And I didn't want to come in here and try to beg. Or even for you to think I would lie to you. I need to get these assignments made up." And to say that to somebody's face? I was a good student, even with everything going on.
Lauren: Good for you for educating, though, for using that as an opportunity for growth.
Shayla: Yes! I always have issues using my handicap placard. At the grocery store, or even when I was parking on campus, people come up to me and say things. One lady, she was, like, "You need to stop using your grandmother's handicap sticker." Just the audacity and the nerve to even go up to somebody and say anything … it's baffling to me that society is just so unaccepting of invisible disabilities. Sometimes if I'm in the mood, I'll take time to tell them that everything is not visible; I'll show them my scars from my multiple surgeries, and then they're sitting there looking silly in the face. But I feel like, also, I shouldn't have to go around and have to overly and constantly explain myself and try to convince people that I do have certain limitations.
Lauren: Also, it's nobody's business. This is the thing that always baffles me, why anyone thinks it's their business. But I suppose it's also cultural. We live in a country where people's bodies are policed. So if that's happening, then I guess it's our right to ask people private probing questions??
Shayla: Yes, exactly. Just so bold. Then I get some feedback from my Instagram feed. People say, "Well, you look fine." Those pictures you see, that's maybe once in a blue moon, where I felt okay to get up, put some clothes on, do my makeup and my hair and take a nice picture, or go out with my friends. You see that one day, but you don't know the 10 days after I take that picture that I'm in bed because I wanted to have one good day out. So I do deal with that a lot, too.
Lauren: So what about this idea of prejudice versus privilege, especially in the healthcare system. We know early on you had that experience of the doctor who dismissed you for being Black. I'm sort of laughing, because it's the most preposterous thing, but I know it happens all the time. You're a woman of color going into the healthcare system seeking assistance for this invisible disability. Can you see your circumstances being different in certain aspects of your treatment if you presented differently … maybe if you were white? If you were male? Would that have influenced the levels of care and belief that people had in you?
Shayla: Oh, absolutely. I just got to the point where I'm able to get pain medication.
Because there was a doctor that told me that people in my community just need drugs to get high.
Lauren: Oh, my God.
Shayla: Yes. Yes.
Lauren: How do you get up when someone throws something like that at you?
Shayla: So that was another thing. I'm not a drug seeker. I'm not trying to get the medication to get high. Like you said, I really do feel like if I presented differently, I probably would have gotten a diagnosis sooner, too. I probably would have gotten the referral to go to Emory sooner because of my pain. Many times I'll go in and it's, "Oh, you're stressed. School is stressful. You have a lot going on." I can't tell you how many times people say "you're stressed, you're stressed, you're stressed." Yes, I'm stressed — because nobody believes me. You know what I mean?
Lauren: But I also am stressed because I'm hurting.
Shayla: Yes, I'm in sometimes debilitating pain. And then another thing, my age. People are, like, "You're too young to be in pain. You're too young."
Lauren: Doctors have said that to you?
Shayla: Yes, doctors and nurses during intake. "Oh my God, you're just so young!" And that really irritates me so much. Sometimes when I go pick up my prescriptions, they say, "You're too young to be on all these prescriptions." Why is it anybody's business as to what I have to take?
Lauren: You're coming to them for help. Please help me. Umm, that doesn't exist.
Shayla: Yes. Right. Like you said, prejudice versus privilege, We know there are certain issues within the healthcare community when it comes to women of color, especially young children and pregnancy and things of that nature.
I don't know if would like to have a child, because I know it's scary. I've already seen how I could be treated.
These are really things that I think about.
Lauren: And that's in health care. What happens if you have a son, and he's a Black boy living in the world? These are considerations. Would you say that racial and gender inequity in the health care system, particularly given your experience, is a public health crisis?
Shayla: It is a public health crisis, it is, absolutely. 110%.
Lauren: I don't think I've ever had someone say no to that question!
Shayla: It is. It's sad, and it's really unfortunate that it's something that we say yes to, but it is so true.
Lauren: So let's talk about your advocacy work, because part of that is about changing what this narrative is. Obviously, you've done small-scale advocacy in the sense that you have taken these opportunities to teach people — like that professor who didn't believe you. You're also using social media right now as a platform to educate people about EDS. Talk to us about what that looks like for you, and your involvement with The EDS Society and others.
Shayla: I've started to be more forward on my social media platforms, because I'm a part of the EDS support group in Georgia, in the state that I live in. And they are absolutely amazing. Melissa, who brought me in, she's absolutely amazing. And I've met some really great people. But I know that now when I sit back and look, in the support group, there's not a lot of people that look like me at all. And so sometimes I'm just, like, I cannot be the only Black girl in America with EDS, I just can't. And so that's why I started to be a little more forward on my social media platform. I found a few people or women of color who are suffering with it as well. And we've had a chance to kind of connect and bond and just share that same journey with each other. But I really, really, really, really want to do more. I feel like I'm not doing enough. I feel like I'm not posting enough.
Lauren: Oh, by the time this episode goes live, I'm sure you'll have grown by leaps and bounds because it's baby steps, isn't it. Because you're also taking care of your own health.
Shayla: Yes, that's true. And it's a lot. And sometimes you're not ready for the kickback that you might get when you post something, because like we just said, people are bold!
Lauren: The Internet and social media have given rise to trolls. And yeah, it can be really tough when you're already dealing with stressors in your day-to-day.
Shayla: Yes, absolutely. I don't know if you saw on my page, but one of my really, really good friends … his name is Brendan Langley and he played for the Denver Broncos. When the NFL had their 'My Cause My Cleats', he dedicated his cleats to my EDS, and he did the zebra prints.
Lauren: I love that!
Shayla: Yes, thank you so much. I was just so overjoyed when he did that. And I was just so thankful, because I'm, like, "You felt enough for me to do something like that for me as your friend."
Lauren: It's also very responsible use of an influence platform.
Shayla: Yes. And so that really kind of catapulted what I wanted to do and bring more awareness. Especially when people say, "Who's your friend?" I don't want to keep being ashamed of this EDS and what it's done.
I've lost friends, I've lost relationships, but it's also brought some really great people into my life.
And I'm just going to keep sharing and doing what I can to bring awareness. I eventually want to start a YouTube page and document my day-to-day thing — and just see where it goes from there.
Lauren: That's wonderful. Just to swing back into the healthcare system really quickly as well … you've given us examples of things that have worked and things that haven't worked. Would you say, on a systemic level, given the nature of the healthcare system here in the US, what works for patients and what really isn't working? What needs to change?
Shayla: We need doctors that that are not going to just look at somebody and make a judgment. I don't want to say we need doctors that care. Because there are a lot of doctors that care. But that doctor that told me that I could never have EDS because I was Black. And then the doctors who are trying to make it seem like I was a drug-seeker, that just made it feel like they didn't care. They're just there to do their job and check off their checkboxes and move on to the next patient. So we need people that care. And we need access to health care. I feel like everybody should have affordable access to health care. It shouldn't be a life-changing decision to make to go to the doctor, or to do physical therapy appointments.
Lauren: You shouldn't be in debt over something you have absolutely no control over either.
Shayla: No control at all. It's not like we can say, "Oh, let me have this chronic illness. And let me have to have 20,000 surgeries."
Lauren: Because we'd all choose that, wouldn't we. I mean, honestly!
Shayla: I'm just thankful that I was able to stay on my parents' insurance and get what I had to have done. And I'm thankful their employers offered them affordable insurance plans. Because, honestly, if that wasn't the case, I don't know where I would be, I truly don't. Because when you have joints hanging on by a thread, and you need to go in and get surgery, getting it tightened up, it's kind of scary to think about, honestly, it really is.
Lauren: What about ways it's working? Are there any pros to the system as it is right now? You're allowed to have all cons and no pros. This is your experience, you know!
Shayla: Yes, that's true. Right now, my primary care physician is amazing. She is absolutely phenomenal.
She listens to me. That's something I've never had before in a doctor.
She listens, I can email her and say, "This is how I'm feeling, this is a symptom." I go in, she says, "What's going on?" She'll give me an update, and she generally shows an interest in making sure she's doing what she can do to make sure that I'm the best that I can be. So, it's truly a blessing for me.
Lauren: When you find the physicians who care and who actually make the time for you and prioritize you, that makes a huge difference.
Shayla: It does, it does. Because ultimately, they're the ones who are going to be your advocate as well when you need certain things.
Lauren: Especially when it comes to a PCP or a general practitioner, when someone's seeing you first for referral, for example, they become the gatekeeper. So if they're not listening to you …
Shayla: They do. She was actually the doctor that finally gave me the referral to Emory. I love you, Dr. Baldwin!
Lauren: Out of curiosity, is she a woman of color?
Shayla: She is.
Lauren: And is it at all surprising to you that it took having a physician who is a woman of color to actually get answers?
Shayla: It is, but then isn't. If that makes any sense at all? Because, previously, they weren't people who looked like me. And so I was excited when I went to that appointment and I saw that, oh, my goodness, she looks like me! And I felt so comfortable just baring it all, laying it all out for her and just baring everything to her. And she actually listened to me.
Lauren: And she understood, I presume, inherently, a part of your experience. Well, parts of your experience that include race and gender, that a white physician or a male physician might not have had an understanding of.
Shayla: Absolutely. And I definitely told her what happened! She was floored. She was absolutely floored.
Lauren: I mean, it's dreadful. And I'm glad that you've shared it with us, because this is a reality for patients.
Shayla: It is! And I feel like sometimes when I'm talking with other people, sometimes they don't get it. You don't live it, so I guess you can't really get it.
But my hope is that someday we can all step outside of ourselves and kind of look at things through other people's points-of view and their eyes and try and understand.
Lauren: So, can you give us some tips … I'd love for you to share. You've been on this journey for a while now. You are stepping into more of an advocacy role for others, certainly for yourself. What are the Top Three Things that you would offer to someone as advice if they are going through this invisible chronic illness experience like you are? What are the Top Three pieces of advice that maybe you would have told your younger self, too?
Shayla: Number one is to surround yourself with people who care. Because that's going to be so important. People who care and people who try to understand and be there for you. There have been instances where, like I said, I've lost friendships, Because one day I'll be feeling fine. You'll make plans. "Yeah, girl, let's go out on Friday." This is Monday; Friday comes, I don't feel well, I can't go. "I can't do this. I'm sorry." "Oh, my God, you're canceling plans again, like really?" Like, why can't we just y'all come to my house and watch movies inside, and just chill and enjoy each other's company. So I really feel you have to have a solid team of people around you who are going to help you through your good days and your bad days, and not make you feel bad about it. Because you shouldn't feel bad for what you can't control. Definitely you have to have a good, solid support system. My second thing is: always, always, always listen to your body. You have to listen to your body, even when it's making you so angry and still upset and making you resent just everything … listen to your body. Because there's times where I haven't listened, and I paid for it dearly. When you're dealing with chronic illness, you know your limits. And you know when you feel yourself getting to your limit, you just have to step back. I know it's hard to accept it. Trust me, to this day, it's hard to accept those days where I just can't do anything but just lay down. But I feel like you just have to listen and be okay with it. And the third thing is, I struggle with this a lot … don't try to compare yourself or look at what other people are doing. You have to take your journey.
Lauren: That's hard because of the social media and advertising …
Shayla: Oh, my goodness, it's so hard! Because I graduated high school in 2013. And like I said, I graduated college back in May 2020. But I have friends, they're finishing up Master's degrees, and so I'm just like, why is it just taking me so long? It makes me so upset, because I feel like I'm not where I'm supposed to be. And everything like that. But like I said, I'm finally, finally getting to the point where I'm okay with Shayla. This is Shayla's journey. And it doesn't matter when you finish. Nobody's gonna say, "Well, how long did it take you?"
Lauren: It took me seven years to get my BA, if it makes you feel any better!
Shayla: Thank you, it does! And so, you know, you just have to be okay with where you are in your journey. And that's going to be easier when you have those people around you who accept you and who are there for you and know when you're having a bad day, who say, "No, we don't have to go out. I'm on my way. What do you want?" That type of relationship. I feel like that's just really, really important.
Lauren: Yeah, absolutely. I think those are great tips. What about one other Top Three list — Top Three Things that give you joy, that you're unwilling to compromise on despite what adjustments you may have had to make in your life around your body? Are there Three Things, be they indulgences or comfort activities when you're having a flare that you turn to when you need to light yourself up?
Shayla: Grey's Anatomy! There is no compromising on that! I've watched it and re-watched it from season 1, 100 times. And I want to keep rewatching it 100 times!
Lauren: Good taste, good taste!
Shayla: Yes. I just love it. You said three things … I got so excited!
Lauren: Grey's Anatomy one, two, and three! (laughs)
Shayla: (laughs) I love to travel. Trips take everything out of me. I know when I get back, I'm gonna need at least a week or two. For real. But I love to travel and I love going to different countries and different places and just exploring and seeing the world.
So that's just one thing I'm never going to stop, no matter how hard it's going to be on my body, or how long it might take me to recover.
That's just not something I'm going to give up. And what's the third one? I don't want to sound boring, but … just my rest time.
Lauren: I was literally thinking, I wonder if rest is on the list.
Shayla: Yes, it is. I've never giving it up, ever. I'm that person. We could be in the middle of a party, if I'm tired and I need to go lay down … peace, okay? I'll see ya later.
Lauren: I love that. We'd be fine at a party together. I'm very much like that myself. So, what is your ask for listeners today? What can they do to support you and the EDS community in the work that you're doing?
Shayla: I just want people to not look at what you see on the outside. I want you to just take a deeper look into people, try to get to know people on a deeper level. Not above the surface. Scratch the surface a little bit more, and just not see people for what they physically appear to be. Because I feel like with EDS, most of the time, it's an invisible disability. And a lot of people who have it, that I know … we all look completely fine. And so it's just people daring to take a deeper look.
Lauren: I love that. And what's next in your advocacy work, as well as your wellness journey?
Shayla: This vegan journey, I'm gonna try it and I want to see what happens. I've been trying new recipes and new things and so that's definitely something I want to take a little bit more seriously. Although I love hot wings, I think I can find a little vegan something they can do. They can fill that void. And like I said, I'm definitely working on a YouTube channel. And definitely going to be posting more. I have a kind of a deeper thing photoshoot coming up soon, just to show people my zebra prints and my stripes. So I'm excited about that. And being the voice for not only the EDS sufferers, but anybody with a chronic illness. Or a little Black girl who just feels like nobody is listening to her when it comes to her health. I'm going to be out here using my voice and my platform to just do the best I can. And if anybody needs to talk to me, you can. I'm here, absolutely.
Lauren: Well, it's just so wonderful because you're turning your experience around into inspiration for others. And that's really what feeds us on this show. That's what this is all about. And it's so wonderful that we can have these hard things happen to us, and we can give back because of them.
Shayla: Absolutely. And again, I appreciate you allowing me to use my voice and to share my experience on your platform. I'm so thankful.
Lauren: I'm so happy you're here, are you kidding! So can you tell everyone where they can find you, Shayla?
Shayla: Okay, so my Instagram is @ShaylaSymone. That's my main platform. And then Twitter is the same, @Shayla Simone. And then Facebook is Shayla Swint.
Lauren: And is there anything else you'd like to share with everyone before I let you go?
Shayla: No, that's it. Thank you so much. I enjoyed it!
Lauren: And as I say to everyone who's on the show, you're stuck with me now. You don't have a conversation like this, that's this deep, and get to know someone this well without walking away friends. So you've got me now and I hope we'll be able to stay in touch.
Shayla: Yes, you've got me. Thank you, and I love your pink hair. It's so cute!
Lauren: Thank you so much!
EDS, ehlers danlos syndrome


Anachronistic elements abound in different aspects of the present-day Tibet issue and perhaps nowhere is this more strikingly obvious than with regard to the question of reincarnation, i.e., the means by which the incarnations of high-ranking lamas are recognized and accorded both sectarian and popular legitimacy.This has been a particularly charged issue and the source of tremendous tensions and rancor since 1995, when the Chinese government—hardly renowned for traditional sympathy to religion—accorded recognition to a young boy as the incarnation of the late Panchen Lama, in outright opposition to the Dalai Lama's recognition of another child as the sought-for incarnation.
Importantly, the Chinese government maintained that Tibetan incarnations needed to be selected through the drawing of lots or tally sticks from a "Golden Urn" (Ch. jinping 金瓶; Tib. gser-'bum), a procedure that had been ordained by the Qing Dynasty at the end of the 18th century. Thus, the Dalai Lama was castigated for his wanton violation of the requisite norms for identifying the Panchen Lama:3 rather than awaiting the verdict of the Golden Urn, he had made a choice based upon his own divinations and consultations with representatives of Bkra-shis lun-po.It is not possible to deal with all elements of this issue in this short paper. Rather, I would like to turn to one or two strands of the story found in Tibetan historical materials.
The way in which the use of the Golden Urn came to be mandated for the selection of Tibetan incarnations has a generally well-known common explanation: in the aftermath of the Qing campaign against the Gurkha state in Nepal, the Qing court made a sweeping reassessment of Tibetan affairs, seeking to find a way of understanding what circumstances had left it with no option but to mount a difficult and costly military expedition to the outskirts of the Kathmandu Valley. The Qianlong 乾隆Emperor (1711-1799; r. 1736-1799) was particularly exasperated with the state of affairs at the upper levels of the Tibetan government and considered the selection of incarnate lamas and lay ministers to both be subject to corrupt influences. In 1793 the emperor promulgated articles that comprised the "Twenty-Nine Regulations for Resolving Tibetan Matters" (Ch. Qinding Zangnei shanhou zhangcheng ershijiu tiao 欽定藏內善後章程二十九條).
The formulation of the various articles is reflected in a variety of Qing sources, such as the Wei-Zang tongzhi 衛 藏 通 志 and others. However, such sources have not contained a complete Chinese-language text of the regulations. Perhaps the most thorough study of them, a series of articles by Liao Zugui 寥祖桂, Li Yongchang 李永昌, and Li Pengnian 李鹏年, published in Zhongguo Zangxue 中国藏学 in 2002 and 2004, makes it clear that the complete texts which have been cited in various Chinese publications since the 1950s are translations from two somewhat different Tibetan-language copies of the regulations. While several memorials on the reform of Tibetan affairs are extant, including those drawn up by the Manchu general Fu Kang'an 福 康 安 and the Grand Secretary of the Grand Secretariat (Ch. Neige daxueshi內閣大學士) Heshen 和珅 and others, the actual, final regulations are available only in these Tibetan copies, one of which can be found in the volume Xizang lishi dang'an huicui 西藏历史档案荟粹[= Bod-kyi lo-rgyus yig-tshags gces- bsdus; A Collection of Historical Archives of Tibet].
The regulations for selecting Lamas were quite clear:the names of the candidates were to be put into a Golden Urn granted by the emperor as soon as those names were adduced by the four great oracles of Tibet. If all four agreed on one candidate, then that candidate's name would be entered into the urn, along with a blank wooden tally slip. The choosing of the blank slip would eliminate the chosen candidate, regardless of the inclinations of the oracles. When used in the cases of high Dge-lugs-pa incarnations, the names of the candidates were to be written in Manchu, Chinese and Tibetan.
The position of some has been that the use of the Golden Urn was generally ignored or carried out in a few rare cases simply pro forma. While Qing authority went into a deep decline after the mid-19th century, the dynasty did exert influence in Tibetan affairs. And in the 19th century the Golden Urn was used in selecting incarnations. Indeed, in 1814/1815 the Qing resident officials in Tibet, the Amban (Ch. zhu Zang dachen 駐藏大臣), had a register of incarnate lamas compiled bearing the title Bod dang/ Bar-khams/ Rgya Sog bcas-kyi bla-sprul-rnams-kyi skye-phreng deb-gzhung.The register contained the names and different incarnations of the lamas within the various incarnation lineages and, as concerned the most recent incarnations, noted whether they had been recognized via the use of the Golden Urn. And in fact, the lamas who were young enough to have been affected by the 1793 regulations had been recognized using the Golden Urn. These included quite a number of important lamas, such as the Karma-pa.
With regard to the use of the Golden Urn in the recognition of the Dalai Lamas, we have evidence from the biographies of the 9th through the 13th Dalai Lamas that indicates that the authority of the Qing in Tibet during the 19th century was such that due acknowledgement had to be accorded the Golden Urn as a procedural tool mandated by the emperor. As will be seen below, it was indeed used in confirming the recognition of most of the Dalai Lamas during this period. With regard to the Panchen Lamas, we find evidence that is particularly unequivocal when we look at the recognition of the 8th Panchen Lama, Bstan-pa'i dbang-phyug (1855-1882), the first to have the Golden Urn figure in his recognition. Given that the present contretemps over the issue began with the recognition of the present Panchen Lama in 1995, it is appropriate to look closely at the circumstances of the use of the Golden Urn when it was first introduced into the process of recognizing a Panchen Lama. But such appropriateness aside, the account of the recognition of the 8th Panchen Lama is important for what it tells us about the attitudes of the Tibetan clerics participating in the process with regard to the use of the Golden Urn.
[39r] Thus, the master, Dbyings-sa No-min-han, etc., came and then from among the Brul-tshang, Ri-sbug and Rtsed-gdongs boys, the three who had been investigated, as well as the two children from the Dbus region of Tshag-gur-zhag- pa and Dngos-grub sdings who [emerged] through examinations by the regent Rwa-sgreng, the great Vajradhāra, along with the high steward and aristocratic monk, Mgon-po, there were [finally] two, the aforementioned Brul[-tshang] child and the [Tshag-]gur-zhag child, who were, through it all, greatly miraculous. And via a message the Great Emperor was also asked to attend to the recognition of these two.
Thus, in the Fire-Dragon Year [1856-1857], so that the recognition could be well prepared beforehand, the venerable Dbyings-sa, in connection with the orders, had the rtse-phyag mkhan-po Dka'-chen chos-mdzad go to gung Bshad-sgra's residence in Shel-dkar, specifically to request his impressions of what was in the messages [Tib. wang-zhu =文書] along with other instructions. Similarly, [39v] the venerable lord, gung Bshad-sgra, also, with regard toroute descriptions, places of residence, etc., i.e., Chinese and Tibetan ways of doing [such things], promulgated secret instructions that stood by themselves and transmitted them to the ears of the venerable Dbyings-sa. Again, together with the great steward Dpal-ldan shes-rab, he travelled to Lhasa; on that occasion he had to come to hear a report of the message of the Great Emperor, transmitted via the senior Amban.
Rnam-rgyal chos-'phel, the Ze-le-spen no-min-han of Bkra-shis lhun-po has written: "With regard to the supreme incarnation of the Paṇ-chen Er-te- ni, the excellent, golden words of the Heavenly Divinity, the Mañjughośa Emperor and Great Lord, have come upon the crown of our heads and holding in our hearts the instructions of the [previous] Paṇ-chen Er-te-ni himself and adhering diligently to the rites of dharma practice, we divided up and dispatched people to investigate what miraculous children there are…" etc. And so the parents, times of birth, and the signs accompanying the births of the two children from Brul-tshang and Tshag-gur-zhag were recorded. Afterwards a request was made to the Precious Dalai Lama, Refuge and Protector, to look into the matter and determine whether the Paṇ-chen Er-te-ni, Refuge and Protector, was unmistakably to be found among these two children. [40r] On the 13th day of the 12th month of the Wood-Hare Year [January 19, 1856] he responded: "I've diligently investigated and the incarnation of the Omniscient Panchen is among the two children; this is quite likely. Thus it can be reported to the Emperor…" etc.
Thus was it stated. And so, with regard to the present incarnation and in harmony with earlier good customs, the [previous] Paṇ-chen Er-te-ni himself has taught that imperial orders obtained concerning investigation by the Great Emperor through his complete wisdom were the most revered hope of all humble subjects. And now that we have come to request, as we must, an investigation of the two aforementioned greatly miraculous children who are suspected candidates, apart from other children whose good signs are not clear, although we must request an investigation [by placing] the names of [only] those two aforementioned [children] within the precious Golden Urn, [41r], we are [formally] requesting that permission of the Great Lord, the Emperor, as per his imperial orders. And so, for that purpose we send our request via the [two] Amban together, in a report for the Great Lord, the Emperor, for His investigation, with proffers of our immediate gratitude on this date in the Fire-Dragon Year.
Returning to the question of context, we must conclude that the prescription of the Golden Urn stems not simply from a cynical assessment of Tibetan affairs, which is largely the way it is presently understood. An overwhelmingly important element is the religious positioning of the Qianlong Emperor, for the use of the urn is surely connected to the belief, described in the passages cited, that the emperor himself was capable of adducing which child was the true incarnation of a deceased lama. This goes a long way towards explaining why there was as much acceptance as there was of a Qing role in a process that was otherwise the exclusive domain of those who were properly initiated. The fact is, the use of the Golden Urn in the 19th century was not simply an object of systematic disregard, as some have described it; after all, the recognition of the 8th Panchen Lama took place in mid-century, well after the demise of Qianlong.
Turning briefly to the Dalai Lamas, we see the use of the urn over the course of the 19th century, though not in every instance. The account of the recognition of the 9th Dalai Lama, Lung-rtogsrgya-mtsho (1806-1815), by his biographer, De-mo Blo- bzang thub-bstan 'jigs-med rgya-mtsho, does not mention the Golden Urn specifically. Yet while one might try to assume that this should provide a counter argument about the imperial vessel, there is a clear indication that the Amban had the final say on the manner in which the recognition proceeded. Thus, the regent wrote that "The Amban Yu suddenly said to me 'Provide the instruments of recognition.' The manner of it was like that of sentient beings testing a Buddha. Though I was greatly frightened and anxious, I could not disobey the word of the Amban and so gradually brought them out…"19 There follows an account of items brought out for the young Dalai Lama to accept or reject as being previously connected to or owned by him.The procedure was successful and on that basis, we are told, the two Amban notified the emperor that this child was indeed the incarnation of the Dalai Lama.
The biography of the 10th Dalai Lama, Tshul-khrims rgya-mtsho (1816-1837), attests to the actual use of the Golden Urn, stating that "in accord with the judgement that the Father and Lord Emperor had previously rendered regarding the incarnation of the Dalai Lama, it would be compatible with tradition if the matter were examined through the Golden Urn."20 We may see here a harkening back to the shadow cast by the tradition of Qianlong.
We have seen that, contrary to what is sometimes said, the Golden Urn was indeed used.On the surface it would appear that this was in part because of the demands of the Qing emperor and in part because of the manifestation of religion and politics as a Tibetan system that endowed the Qianlong Emperor with serious religious authority. In those instances in which the Golden Urn was not used, the Amban were consulted and were part of the process by which the Qing court was kept informed of what was happening. Still, with the end of the Qing and the disappearance of the Amban the Golden Urn ritual would seem to have come to an end as well.
Thus, its reappearance in the most heated of circumstances elicits a good deal of curiosity.Following the fall of the Qing in 1911 there was in China a general denunciation of the Qing rulers as reactionary and divisive. This was the case in the early years of the Republic of China; writers in the early People's Republic of China have also described Qing policies with the term "Great Manchuism" (Ch. 大满族主义 ); i.e., "Manchu Chauvinism."24 One cannot but note somewhat wryly that after almost a century of rhetoric on the part of both the Republican and Communist governments of China depicting the policies of the Qing upper strata as backwards and oppressive, the PRC has chosen to resurrect this one particular Qing institution and force it on Tibet, maintaining that it is absolutely necessary in choosing an incarnation. Naturally, this has meant ignoring the crucial basis for the use of the Golden Urn: acceptance of the ruler as an emanation of Mañjughośa. Surely it is unnecessary to point out that this element is absent in the relationship between the highest leaders of the People's Republic of China and Tibetan Buddhist hierarchy.
This brings us back to the list of incarnate lamas described above. As already mentioned, the 14th Karma-pa, Theg-mchog rdo-rje (1798-1868), is noted as having been chosen through its use.25 Given what we know about the use of the Golden Urn, it is interesting to note that while the 14th Karma-pa was recognized through the use of the Golden Urn at the beginning of the 19th century, all reports of the recognition and enthronement of the 17th Karma-pa, O-rgyan phrin-las rdo-rje (1985-), indicate that thiswasnotthecasewithhim. Detailedaccountsofhisdiscoveryandenthronement make no mention whatsoever about recourse to the Golden Urn.26 It would appear that its use with regard to the incarnation of the Panchen Lama represents an anachronistic resurrection of the Qing method of recognizing incarnations rather than an element of continuity with earlier traditions.
It is hard not to see something cynical in this: the use of the Golden Urn in recognizing Tibetan incarnations is clearly meant to impart legitimacy to Chinese control over the incarnation of high lamas (with a particular eye to the Dalai Lama's next incarnation) through the establishment of historical continuity. The PRC, in excoriating the Dalai Lama for not accepting its use of this Qing procedure, is consciously manipulating an element in earlier Sino-Tibetan relations. Certainly there has arisen no new vogue in China for Qing institutions elsewhere in the PRC. It is impossible to ignore here China's desire for historical precedent as a simple legitimizing element for its administration of Tibet. The fact is, the use of the Golden Urn is one of the few elements of history that Chinese authorities feel they can call on to reinforce the modern Chinese notion that China's central government enjoyed primacy in Tibetan affairs from the Yuan period (1271-1368) up to the present. The notion that Tibet somehow warrants the restoration of this one element of Qing rule is best viewed as part of a larger struggle to bring history and historical precedent to bear on the legitimacy of PRC policies and rule in Tibet today.
In questions concerning the status of Tibet the "verdict" of history is what is invoked in China to establish the legitimacy of Tibetan status. As such, an historical precedent for Central Government control over the recognition of incarnations is essential for establishing legitimacy through continuity. But in this instance what we have is, as noted, a resurrection rather than a continuation.
 See Doje Cedain, "The Dalai's Disregard for Precedence," China's Tibet 3 (1996), pp. 2-6.
 See the various statutes derived from the regulations in Songyun 松荺, Wei-Zang tongzhi 衛藏通志 (Taipei, 1965), 12.1a-17a.
 Xizang zizhiqu dang'anguan 西藏自治区档案馆[=Bod rang-skyong-ljongs yig-tshags-khang; The Archives of the Tibet Autonomous Region], Xizang lishi dang'an huicui 西藏历史档案荟粹 [= Bod-kyi lo-rgyus yig-tshags gces-bsdus; A Collection of Historical Archives of Tibet] (Beijing, 1995), doc. 50.
 Elliot Sperling, "Awe and Submission: A Tibetan Aristocrat at the Court of Qianlong," International Review of History 20 (1998), pp. 325-335.
 Liao Zugui, et al., cit., 2004.2, pp. 36-37.
 Eg., Tsepon W.D. Shakabpa, Tibet. A Political History (New Haven, 1967), pp. 174-176; and Hugh Richardson, A Short History of Tibet (New York, 1962), pp. 70-71.
 Bod dang/ Bar-khams/ Rgya Sog bcas-kyi bla-sprul-rnams-kyi skye-phreng deb-gzhung, in Bod-kyi gal-che'i lo-rgyus yig-cha bdams-bsgrigs (Lhasa, 1991), 281-369. The register was revised in 1820/1821.
 It is assumed that the date here is given according to the Chinese calendar, given the use of the reign title Qianlong. If it is the Tibetan calendar that is meant the date would be January 23, 1783, one day later.
 Blo-bzang bstan-'dzin dbang-rgyal, Rje-btsun Blo-bzang dpal-ldan chos-kyi grags-pa bstan-pa'i dbang-phyug dpal-bzang-po'i rnam-thar dad-ldan pad-tshal bzhad-pa'i nyin-byed snang-ba (Bkra-shis lhun-po blockprint [available from the Tibetan Buddhist Resource Center], completed on Dec. 10, 1888 (f. 333r: Sa-Mo-Glang-gi bgrang-bya'i tshim-byed zla-ba'i dkar-po'i phyogs)]), ff. 39r-41r: De-ltar Dbyings-sa No-min-han sku-ngo sogs phebs-nas rtsad-gcod gnang ba'i Brul- tshang/ Ri-sbug Rtsed gdong bcas-su yod-pa'i sras gsum dang/ rgyal-tshab Rwa-sgreng Rdo-rje 'chang chen-po/ gsol-che/ las-cha rje-drung Mgon-po bcas-nas thugs-zhib skyangs-pas Dbus- khul Tshag-gur-zhag-pa dang/ Dngos-grub-sdings gnyis-kyi sras bcas-kyi khongs-nas-kyang gong-du brjod-pa ltar Brul-sras dang/ Gur-zhag-pa'i sras gnyis snga phyi kun-tu ngo-mtshar che-zhing/ de-nas 7Gong-ma chen-por yang de-gnyis snyan-sgron thog ngos-'dzin bzhed- bskyangs-te/ de-yang Me-'Brug-lo nang-du mdzad-bzhed-la sngon-tshud thugs-gra legs-'grig yong-ched bcas-la 7Dbyings-sa mchog-nas bka'-'brel-gyis rtse-phyag mkhan-po Dka'-chen chos-mdzad lags/ gung-shad sgra-ba Shel-dkar-du bzhugs yod-pa'i sar wang-zhu'i 'char-zin dang bcas gang-ci'i bka'-slob zhu-bar ched phebs-bzhin [39v] mi'i dbang-phyug gung Bshad- sgra mchog-nas kyang/ lam-gsung/ gzhugs-yul sogs Rgya Bod gang-ci'i byed-phyogs skor-la nang-ma'i bka'-slob gzhan-dring ma-mchis-pa stsal-ba rnams Dbyings-sa mchog-gi snyan-du zhib-lhongs zhu gnang mdzad-de/ slar-yang gsol-dpon chen-po Dpal-ldan shes-rab lags dang mnyam-sbrel-du Lha-ldan phyogs-su chibs-bskyod thog am-ban chen-po brgyud Gong-ma chen- po'i gser-snyan sgron-rgyu'i skor-la phebs dgos byung-ba ltar/ Me-'Brug zla-ba drug-pa'i tshe nyer-gnyis nyin-nas bzungs Lha-bskyod thog bka'-mngags Bod-bzhugs blon-chen am-ban lhan- rgyas-la/ wang-zhu phul-ba'i tshig-gzhir/ Bkras-lhun Ze-le-spen No-min-han Rnam-rgyal chos- 'phel-nas zhu-ba/ 7Pan-chen er-te-ni nyid-kyi mchog-sprul skor/ Gnam-gyi lha 'Jam-dbyangs 7Gong-ma bdag-po chen-po-nas gser-gyi bka'-bzang spyi-bor phebs-pa dang/ 7Pan-chen er-te- ni-de-nyid-nas bka'-slob gnang-ba snying-la bcangs-te chos-spyod sku-rim-la 'bad-zhus zin-pa'i thog-nas/ yul-phyogs tshang-mar khye'u ngo-mtshar che-ba ji-yod zhib-'jug byed mi-khag bgos- kyis btang-ba-rnams-nas zhes sogs Brul-tshang-gi sras dang Tshag-gur-zhag-pa'i sras gnyis-kyi yab-yum 'khrungs-tshes 'khrungs-ltas sogs 'khod-rjes/ de-dag-gi gnas-tshul zhib-gsal thog khye'u 'di-gnyis-kyi khongs-su skyabs-mgon Paṇ-chen er-te-ni'i sprul-sku 'khrul-med phebs yod- med [40r] 7skyabs-mgon Ta-lā'i bla-ma rin-po-cher thugs-brtags zhus-par Shing-yos zla-ba bcu- gnyis-pa'i tshes bcu-gsum nyin bka'-lan phyir-phebs-la brtag-pa nan-tan bgyis-par gong-gsal gnyis-kyi khongs Paṇ-chen thams-cad mkhyen-pa'i mchog-sprul yod ngo che-bas 7Gong-ma bdag-po chen-por gser-snyan sgron thus phebs-shing zhes sogs dang/ yang de-rjes zhib-na Paṇ– chen er-te-ni sku-phreng drug-pa Blo-bzang dpal-ldan ye-shes gnam-skyong bdag-po chen-po'i gser-zhal mjal-bar phebs thog-nas gser-gyi rgyal-khab chen-por zhing-du gshegs-pa'i 7mchog- gi sprul-sku bdun-pa Blo-bzang dpal-ldan bstan-pa'i nyi-ma phyogs-las rnam-rgyal dpal-bzang- po de-nyid 'khrungs-te dogs-gnas dang rting dang bcas bkas-mngags blon-chen brgyud gser- snyan rin-po-che sgron-bar Gnam-skyong dgung-lo zhe-bdun-pa'i zla-ba bcu-gnyis-pa'i tshes nyi-shu-la bka-yig phyir phebs-su/ Pi-cin nge-can-gyi Paṇ-chen er-te-ni'i sprul-sku 'khrul-bral nges-par thag-gcod-rgyu'i skor zhu-shog phul-ba ngas kha-phye-nas bltas-ma-thag Stag-lo 'di'i zla-ba bzhi-pa'i tshes brgyad-la Gtsang-khongs Bsnam-skyid gshong-gi sar pha sde-pa Dpal- ldan don-drub dang/ ma 'Chi-med rgyal-mo gnyis-la bu gcig skyes-zhes-pa mthon-ma-thag nged-kyi dgongs-par sprul-sku yin 'dug snyam-du nges-byung-zhes-pa'i gser-gyi bka' bzang-po phebs-nas ye-shes-kyi gzigs-pa chen-pos dpyad [40v] dpyad-de 'phral-du gser-khrir mnga'-gsol mdzad-pa deb gsal-la Paṇ-chen er-te-ni de-nyid sku-tshe ring-zhing-zhes sogs sku-tshe ring-ba dang mdzad-'phrin rgyas-pas sogs dang/ yang de-rjes Paṇ-chen er-te-ni de-nyid gzhan-don-du phebs skabs phran sku-bcar zhabs-zhu-ba-rnams-nas mchog-gi sprul-pa'i sku nges rnyed yong- ba'i gsol-ba btab-par/ bka'i phyir-phebs-su ngos-kyi skye-bar dogs-pa'i khye'u ngo-mtshar che- ba byung-na dngos-gnas zhib-gsal 7Gong-ma bdag-po chen-po'i gser-snyan-du sgron-tshe gnam-gyi lha yab-rje Chan-lung chen-pos ngos-rang ngos-'dzin thag-gcod-kyi bka'-phebs-pa ltar dogs-gnas skye-srid de'ang / Gong-ma bdag-po chen-po-nas rnam-mkhyen ye-shes-kyis dpyad-do ngos-'dzin thugs-rje che-ba zhig gsol-ba btab-ste gser-gyi bka' ji-ltar phebs-pa de- bzhin skye-bar ngo-bzung thag-bcad byas-na don thams-cad 'grub yong zhes phebs byung lags- na zhes sogs rje'i skye-srid 'di skor sngar-srol bzang-po dang mthun-par Paṇ-chen er-te-ni de- nyid-nas bka'-slob phebs-pa bzhin Gong-ma chen-po-nas rnam-mkhyen ye-shes-kyis dpyad-de gser-gyi bka'-bzang thob-pa zhig gus-'bangs tshang-ma'i mos-mthun-gyi re-ba'i gtso-bo lags- shing/ yang gser-bum brtag-dpyad zhu-dgos phebs-na dogs-gnas-kyi khye'u ngo-mtshar che-ba gong-gsal gnyis-las gzhan-ma khye'u ltas-rtags bzang-ba'i rigs mi-gsal 'dug-pa gong-gsal gnyis- kyi mtshan-byang gser-bum rin-po-cher brtag-dpyad [41r] zhu-dgos-kyang 7Gong-ma bdag-po chen-po'i gser-gyi bka'-bzhin zhus chog-pa zhu rgyu lags-na/ am-ban chen-po lhan-rgyas-nas dngos-gnas-kyi zhu-ba rnams Gong-ma bdag-po chen-po'i gser-snyan rin-po-cher zhib-gsal sgron-brgyud 'phral-du thugs-rje-che-ba zhu-rgyur/ de'i ched-du Me-'Brug zla-tshes-la phul/. I would like to acknowledge the generosity of my colleague Mr. Gedun Rabsal who kindly discussed this passage with me and offered suggestions on several points.
 Ibid, f. 45v: Tshe nyer-bzhi'i nyin Rgya-Bod mi-drag ser-skya phal-mo-che 'dzoms-thog Bod- bzhugs blon-chen He Sman am-ban zung-nas zhal-'don tshig-mtshams-thog gser-bum dkrugs- 'don skabs byang-bu gcig-las med-pa gtam-gleng-ba byung-zhing/ gser-bum-nas Rnam-rgyal dbang-'dus rgyal-mtshan zhes-pa'i mtshan-byang He am-ban chen-po'i sug-rtser rgyang-thon byung-bas de-'phral der 'khod tshang-mas lha-rgyal 'brog stong ldir-ba ltar 'then-pa byung/. Concerning the two Amban, see Josef Kolmaš, "The Ambans and Assistant Ambans of Tibet (A Chronological Study)," Archív Orientální–Supplementa 7 (1994), pp. 53-54.
 De-mo Blo-bzang thub-bstan 'jigs-med rgya-mtsho, Rgyal-ba'i dbang-po thams-cad mkhyen- pa Blo-bzang bstan-pa'i 'byung-gnas ngag-dbang lung-rtogs rgya-mtsho dpal-bzang-po'i zhal-snga nas-kyi rnam-par thar-pa mdor mtshon-pa dad-pa'i yid-'phrog (Dharamsala, 1998), pp. 647-648: "…Yu'i am-ban nas phran-la glo-bur-du ngos-'dzin-gyi yo-byed-rnams khyod- kyis stob-ces bka'-gnang-bar/ tshul 'di ni sems-can-gyis sangs  rgyas la tshod-bgam-pa ltar-du 'dug-pas/ shin-tu bsnyengs-pa che-ba dang ya-nga-ba byung-rung/ aṁ-ban-gyi tshig- las zlog ma-nus-pas rim-bzhin phul…".
 Dar-han Blo-bzang 'phrin-las rnam-rgyal, Rgyal-ba'i dbang-po thams-cad mkhyen-gzigs bcu-pa chen-po Ngag-dbang blo-bzang 'jam-dpal bstan-'dzin tshul-khrims rgya-mtsho dpal bzang-po'i rnam-par thar-pa ngo-mtshar nor-bu'i 'phreng-ba (Dharamsala, 1998), 34: "Tā-la'i bla-ma'i skye-srid skor-la snga-dus Gong-ma yab-rje chen-po'i bka'-bcad-mtshams-kyi dgongs-don-ltar gser-bum-du brtags-dpyad byas-na lugs-srol dang mthun-shing…".
 Mtshan-zhabs bla-ma Blo-bzang ngag-dbang, Lhar-bcas srid-zhi'i gtsug-rgyan rgyal-mchog ngur-smrig 'chang-ba bcu-gnyis-pa chen-po'i rnam-par thar-pa rgya-mtho lta-bu-las mdo- tsam brjod-pa dwangs-shel me-long (Dharamsala, 1998), p.
 Phur-lcog yongs-'dzin Thub-bstan byams-pa thul-khrims bstan-'dzin, Lhar-bcas srid-zhi'i gtsug-rgyan Gong-ma rgyal-ba'i dbang-po bka'-drin mtshungs-med sku-phreng bcu-gsum-pa chen-po'i rnam-par thar-pa rgya-mtho lta-bu-las mdo-tsam brjod-pa ngo-mtshar rin-po-che'i phreng-ba (Dharamsala, 1998), pp. 25-26.
 Huang Fensheng 黄奋生, Xizang qingkuang 西藏情況 (Shanghai, 1953), p. 111.
 Bod dang/ Bar-khams/ Rgya Sog bcas-kyi bla-sprul-rnams-kyi skye-phreng deb-gzhung, in Bod-kyi gal-che'i lo-rgyus yig-cha bdams-bsgrigs, p. 292.
 See Blo-bzang shes-rab, et al., Karma-pa sku-phreng bcu-bdun-pa (Lhasa? 1993?); and Zhou Dunyou, "New Master in the Curpu Monastery," China's Tibet 1 (1993), p. 7: "After the death of the 16th Living Buddha Garmapa, the Curpu Monastery sect adherents, following his testament and religious practices and rituals, found his successor, the reincarnated soul boy Ogyain Chilai, in Qamdo Prefecture of the Tibet Autonomous Region in May 1992." The article gives a detailed account (pp. 8-9) of the installation ceremony with not a word about the Golden Urn.


text:
Q: Using math mode in a label How can one use something like $\mathbb{R}^k$ in a label? I.e.
\label{three equivalent properties of $\mathbb{R}^k$}.
Currently when I try this I get an error.
Here's a MWE:
\documentclass[a4 paper,11pt]{article}
\usepackage{amsmath, amssymb, amsthm, parskip}

\begin{document}

\newtheorem{thm}{Theorem}

The letter $\mathbb{R}$ prints fine on its own. \\

\begin{thm}
And this theorem causes no issues.
\end{thm}
But putting math in the label is an issue:

\begin{thm}
\label{Putting an $\mathbb{R}$ here is an issue.}
This one can't be printed.
\end{thm}

\end{document}

The error message:

A: The label is just an identifier for cross references. While it's not strictly required to be a string of characters, it's better to: the argument to \label is subject to "full expansion" and commands such as \mathbb don't survive it. Commands in the argument to \label are commonly used internally, for example when labels are autogenerated from macros for special purposes.
Spaces are allowed, but in my opinion it's better not using them.
You could define \funnylabel and \funnyref macros
\documentclass[a4 paper,11pt]{article}
\usepackage{amsmath, amssymb, amsthm, parskip}

\newtheorem{thm}{Theorem}

\newcommand{\funnylabel}[1]{%
  \label{\protect\detokenize{\detokenize{#1}}}%
}
\newcommand{\funnyref}[1]{%
  \ref{\detokenize{#1}}%
}

\begin{document}

The letter $\mathbb{R}$ prints fine on its own.

\begin{thm}
And this theorem causes no issues.
\end{thm}
But putting math in the label is an issue:

\begin{thm}
\funnylabel{Putting an $\mathbb{R}$ here is an issue.}
This one can't be printed.
\end{thm}

\funnyref{Putting an $\mathbb{R}$ here is an issue.}

\end{document}

but I strongly discourage you doing so. Besides, I firmly believe that
\label{equiv-properties-Rk}

is much better than
\funnylabel{three equivalent properties of $\mathbb{R}^k$}

because it's easier to type and to memorize.

redpajama_set_name: RedPajamaStackExchange


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