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PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.

Anita Rao 0:00
In the summer of 2020, Soph Myers-Kelley and their mom, Rene Myers, were at home one afternoon doing a very non traditional bonding activity.

conference 0:10
Hello, everyone. Progress. We have just gone live...

Anita Rao 0:14
streaming an international conference.

conference 0:16
We're going to be covering so many things over the next two days.

Anita Rao 0:21
The conference was about Ehlers Danlos Syndrome, a connective tissue disorder that Soph had been diagnosed with the year before.

Rene Myers 0:29
I had a notebook and was taking notes, you know, things that I wanted to know and remember for my child,

Anita Rao 0:37
Rene, had never heard of Ehlers Danlos, so she started watching in the role of caretaker.

Rene Myers 0:44
And then I started going, well, I got that symptom. Oh, I've got that symptom. And I started keeping track. And when I hit like 15 or so symptoms, I looked itself and I said, I think I've got the same thing you do. I

Anita Rao 1:03
Rene was 60, Soph was 25 and they were about to begin a whole new chapter of their lives together that would change the way they made sense of their pasts and reshape their future. This is embodied our show about sex relationships and your health. I'm Anita Rao,

Soph Myers-Kelley 1:28
good morning. It's 712, in the morning, and I'm about to take my morning medication. That's

Anita Rao 1:35
Soph, giving us a peek into his daily life with Ehlers, Danlos Syndrome, or EDS, I

Soph Myers-Kelley 1:41
won't be able to eat or drink for an hour, and I won't be able to have any dairy for two hours. So I'm going to do that right now, and while I wait to eat, I'm also going to get ready for a doctor's appointment. That's at 810, and I'm probably going to do some quick stretching to minimize some of my pain. The

Anita Rao 1:59
Chronic genetic disorder that Soph and his mom have can mean everything from waking up with a dislocated jaw or shoulder to needing frequent surgeries and dealing with chronic pain. Eds has 13 different variations and can affect all connective tissue, from bones and ligaments to blood. So it looks different in every body.

Soph Myers-Kelley 2:19
It impacts everything that I do, and every moment of how I feel. I am hyper mobile, so I bend more than the average person, and that means everything I'm doing, moving, walking, picking up something, I need to be aware of, how I'm positioning my body and making sure I'm doing it appropriately, as well as what I'm eating, how much I'm exerting myself, how I'm talking to other people, and what I choose to do throughout the day.

Rene Myers 2:44
When I wake up in the morning, it's a given that I have pain, because I now have it 24 hours a day, I'm assessing every morning. Where is that pain? So what do I need to be aware of today? It could be I slept on my left side and my left shoulder dislocated. That's all it takes. The way I explain it to other people is imagine a rubber band, and when you get it, it's brand new, and it's tight, and it can do the things that you want it to do, but as you use that rubber band. It gets stretchier and stretchier to it eventually snaps in. Most people, connective tissue doesn't get to that snapping point. It might stretch a little bit, but that's just normal. But for people like us, it stretches and then it stretches more, and then it stretches more to the point where you can no longer use it, or you have to have some extreme adaptations to make your body do what you want it to do. That's a really

Anita Rao 3:50
helpful, clear metaphor. I know that it's really common for people to go decades or more without getting a diagnosis of EDS. So if you got yours in 2019 when you were 25 and it started with you kind of experiencing all of these different health issues that were kind of being treated in silos. When was the turning point where you started to think there was something more underlying going on that connected all of these things you were experiencing?

Soph Myers-Kelley 4:18
It took a few years into the process. In the first year, it seemed like hypertonic pelvic floor dysfunction, so my pelvic floor being too tight, and then vulvodynia, or unexplainable, not known, cause pain of the vulva, that seemed to be the end of it. But then as a couple years went on, that pain spread, and we ended up with tendinitis and shoulder and knees and heart issues, feeling light headed and brain fog, so all this stuff, then that wasn't responding well to your standard treatments. I was doing physical therapy for tendinitis, for example, and often the exercises were making it feel worse. I was having a hard time where I couldn't go up and down stairs. I still avoid stairs now. Yeah, but I had to go and talk with providers and say, I'm not responding to treatment like most people would. I have all these issues that are all around my body that are seemingly unrelated, but none of them are getting better. There has to be something more to this story that connects all of it and with Ehlers, Danlos Syndrome, there's a saying in our community that that goes if you can't connect the issues, think connective tissues. Oh, I love that. Seeing it on social media, Instagram, Facebook, seeing people that I followed on YouTube come out about their chronic pain journey and having Ehlers Danlos Syndrome, you start to look and recognize yourself to the point where there are one or two dozen similarities. You go, Okay, this isn't just like, oh, we have some relation. This is very probable. And one of the biggest things at the end for me, before I started seeking a formal diagnosis, was talking with a physical therapist who we both saw, who was incredible in Minnesota. And I went and said, I've been, I've been researching. I wonder if Ehlers Danlos Syndrome fits my story. And she said, I thought we already knew that. I'll be honest, she's like, I can't diagnose you. But I mean, that's, it's very obvious to me that that is your condition. And she helped me get to the point where I could get evaluated effectively. So

Anita Rao 6:06
Rene, when you were watching Soph go through this and so brought up the possibility of having EDS, I'm curious about what your initial thoughts were, and whether you found yourself going back in time to moments when Soph was a kid, and kind of re experiencing memories in a different way.

Rene Myers 6:27
Yes, My earliest memory of EDs and so long before we knew that that's what it was, was when Soph was two or three, and I was walking down the street holding his hand, and, you know, like toddlers will do, you're going this way, and they go that way. Soft didn't let go of my hand, but kept going that way. And then after that, was crying and crying and crying, and an hour later, was still crying, and I said to soft dad, like I think there's something wrong. And we did go to the doctor. It turned out they called it nurse maid's elbow, which is when your elbow comes out of its socket. And younger children, that's not that much of an unusual thing to happen, because their connective tissue is still finding its place, but it happened again, and after it happened again, so doctor showed me how to put it back in its socket. Oh, wow.

Anita Rao 7:32

So that became, like a part of your all's routine that you Yeah, and

Rene Myers 7:36
you mentioned earlier silos that was treated as one incident, one situation, one condition, and we just moved on with our lives. We never thought anything more of it. Were

Anita Rao 7:48
there childhood memories or moments that came up for you Soph of like, oh, wow, my body responded really differently than everyone else's, and now I maybe have a sense of why,

Soph Myers-Kelley 7:58
absolutely, absolutely and what was difficult for both of us was I would experience this thing, and it would be difficult, and then my mom would say, Oh, I went through that too. And so without her intending to do this, we both said, Oh, this is normal, and continued on with our lives. And then avoided getting that EDS diagnosis until I was 25 one of the most notable examples was in middle and high school. As part of gym, standard gym, I needed to run a mile, or I needed to run two miles, and that was excruciating for me. I hated running, and I hated it because it was very painful, and nobody else understood why I was responding that way. They thought I was unmotivated or lazy, or all sorts of terrible things that I look back on, and they weren't the case I was I would cry and talk to the counselor, and she was also perplexed about why I was having such a traumatic response to what was so normal for other kids, maybe uncomfortable, but certainly within their bodies limitations, and it helped them grow and become stronger, whereas for me, I never enjoyed a run, and I never will. And now I can think about when we saw an EDS conference, a virtual Summer Conference, and saw patient stories. There was a middle aged man who loved running and had to do 12 or 13 surgeries as a result of that, and their doctors were like, Please stop,

Anita Rao
because your joints just can't take that level of impact.

Soph Myers-Kelley 9:20
That impact is terrible. A lot of people might ask if we can have collagen supplements and if that will fix everything, but because our bodies don't have the right recipe to integrate collagen into our bodies, no matter how much collagen we throw at it, it's not going to fix our problems. There are so many things, like football, contact sports, things that are wonderful for human beings in general, and for us, it's not, and that's why, in a nutshell, me getting diagnosed at 25 versus mom in her 60s, you can see such a vast difference in how our bodies are now and what I've been able to prevent and what my mom was not given the opportunity to because of her lack of health resources and being diagnosed at the time. So

Anita Rao 9:57
there obviously were many moments along. The course of your all's lives where you were experiencing the same symptom, had you connected the dots? So, like, had you diagnosed your mom in your head?

Soph Myers-Kelley 10:09
Absolutely we Yeah, it's a genetic condition, and so it very likely came from my mom or my dad. It can happen somewhat spontaneously, but family history is also part of the diagnostic criteria. At this time, there's no known genetic signifier for our type, hypermobile, Ehlers, Danlos Syndrome, type three, but there is a set of criteria that professionals have tried to string together. It's imperfect, but doing that myself and knowing my mom's history, it was very apparent that she was a likely contender for EDs, but it was harder for you to accept, and so I learned to be patient and wait for those dots to be connected. For herself, what

Anita Rao 10:48
was going on for you? Rene, on that front first,

Rene Myers 10:51
I want to say that Soph has diagnosed me before myself a number of times. So that was not unusual, but I really was focused on my child. Yeah, I was really focused on wanting to be supportive as much as possible for something that neither one of us knew a whole lot about. And it was a slow realization and a slow acceptance for me, because part of me was just in shock, yeah, like, how have I made it 60 years? And no one has ever thought that this could be a thing.

Anita Rao 11:33
In just a moment, we'll hear how Ehlers Danlos has shaped how both Rene and Soph relate to pain, and why their next step in taking care of each other involved moving into the same house. You're listening to embodied from North Carolina public radio, a broadcast service of the University of North Carolina at Chapel Hill. You can also hear embodied as a podcast, follow and subscribe on your platform of choice. We'll be right back. This is embodied. I'm Anita Rao, a heads up that this portion of the conversation contains a brief mention of sex and sex acts. If you want to listen later, you can find this episode wherever you listen to podcasts. Rene Myers had suspected for several decades that something was wrong with her body.

Rene Myers 12:22
I had professionals telling me that if I lost weight, that that would make it better. If I exercised, that would make it better. If I did this or that or the next thing, it would make it better. And not all the time, but many of those times I did do what they told me to do, and the pain did not go away. And I had convinced myself, you know, by age 60, well, this is what people feel like at this age.

Anita Rao 12:54
Rene didn't get clarity until a few years ago, when she found out that she has the same connective tissue disorder as her child, Soph, Ehlers, Danlos Syndrome, we're talking today with both Rene and Soph about how discovering the shared diagnosis one year apart has affected their lives and shaped their relationship. Do you feel like Soph, that you all have different relationships to pain because of your ages or because of your generations, and how has that come up? As you have talked together about this, like you have some shared language, but I'm curious how you talk about pain in your bodies, coming at it from such different generations. I

Soph Myers-Kelley 13:38
think there's a natural difference because, like my mom was saying, she had to accept eventually that she was just older, or there was some problem where she wasn't losing enough weight. And that was a personal problem when people my age and younger were more likely, perhaps with social media, with talking with each other, and sharing medical notes, able to say, no, okay, actually, I'm looking at all this and I'm doing everything right, and it's still not working. So there has to be another reason than just to say it's all my fault and I'm not trying hard enough. Yeah, and again, that's not a negative reflection on that generation. It's a reflection of this was how you were supposed to treat doctors and health professionals, and you were supposed to believe them and not necessarily ask questions, and that that was seen as disrespectful. And now we can say my health comes first, and I deserve to be diagnosed and evaluated appropriately in a friendly way, a respectful way, towards all sizes, towards gender, towards you know, I'm on testosterone, I'm on hormone treatment, and that's not necessarily the cause of all my problems. Yeah, it becomes an intersectional issue very quickly. So

Anita Rao 14:51
I want to move to this moment where you two are now living together. I believe Rene, you moved in with so last. Last summer, June, okay, about a year, a little over a year ago, I'd love to hear a little bit about how and why the two of you came to that decision, and what role EDS played in that decision. Soph,

Soph Myers-Kelley 15:14
absolutely. My mom and I have always had a strong relationship, and we have perhaps the most shared identities in our blood family. So we've always been able to relate to each other even when we disagreed or had hard times. And with EDS, with shared queerness, with disability, we're able to have a healthy relationship. I believe in queer, platonic family of chosen family, and she's my chosen family and my blood family. And I want her to age well, and I want her to have a space where there's no stairs, if possible, where she can eat what she needs to, where she can take care of her body, and she can have freedom. That's what I think a good community and a good family is, is you support each other regardless of your abilities, and you recognize the innate human worth and talent you have as a person. Did

Anita Rao 15:58
you extend the offer to Rene or Rene. Was it your? Did you plant the idea?

Rene Myers 16:02
So extended the offer to me after I came here and visited from Minnesota while I was still working, and so, you know, brought it up while I was here. Well, you should come live here. And I'm not good at asking people for help in that way, especially when it comes to my children, because I always feel I'm the one who's supposed to be helping you. So when I heard that, my knee jerk instant wanted to react was yes, yes, but I wanted self to be sure, and I went back home kind of expecting self would forget it or would change their minds. Like mom's a handful, you know. And do I really want? And I waited, and eventually self brought it up again. I'm like, Yeah, I really want to do that Minnesota while I love it and I'm going back to snow in a few days to visit. It was no longer a safe place for me. I could not walk outside of my home last year unless I was going directly to my car, and I could not risk a fall, and I needed to be on one level, and I needed not to have to take care of law and things and things like that, and everything that self offered me was everything I needed

Anita Rao 17:23
you had mentioned earlier, like the experience of you could wake up and your shoulder might be dislocated had you gotten used to just like popping it back in yourself. Or how do you handle like, the day to day manifestations of EDs in your life right now, and how has that shifted since the two of you have been living together

Rene Myers 17:42
last year in my last year of employment and this year are physically very similar. But last year, I still had to get up and go to work. Yeah. I still, you know, had bills to pay. I still had to figure out how was the lawn going to get cut. I still had to figure out who was going to take my dog for a walk this year. Now, if I wake up and my shoulder is dislocated or a finger or a knee, I can adapt my day to what my physical needs are. And some days that means I can get up and do laundry and take my dog out myself, and, you know, do those things, and other days, it means I share with self. Hey, today's not a good day. I have a lot of pain so that they're aware, and then I take it easy. I don't do things that are going to make it worse. But I have that luxury, yeah, being retired. So

Anita Rao 18:39
what kind of boundaries and structure have you put in place for this new phase of y'all life together, sharing space, also when you're dealing with chronic pain and have your own day to day needs? That

Soph Myers-Kelley 18:55
was a tough line that I needed to realize for myself, because I didn't have it at the beginning. I didn't know what that would look like. So what it's come down to is I offer as many resources as I have available. For her. I have a subscription to a physical workout service that's specific for Ehlers, Danlos Syndrome. We need to work out differently. I have resources. Here's some nonprofits that will support you. Here's someone that might be able to help get a ramp in our house, all these different things. Here's these people who I see, who helped me with my health, but then I leave her the agency to follow through on what's meaningful and helpful for her, because I know if I do all of those things for her, I'm meddling to a point where I'm in charge of her life, and I'm going to be resentful for that, and she's going to be resentful for that, and she's not in a place where she needs that. So she goes and does what she needs to do if she needs to have a hard, pain day in bed and rest, and I can give her a cup of tea like I give her support. I say, I'm sorry you're having a bad day, and then I let her manage it be. Because she's a full grown, amazing adult who needs to do those battles. And she does. She rises up to them, to our faith, that while we cannot change our fate, we choose to live up to it. And similarly, I'm also a married man in the house. I live with my spouse and these two other adults chosen family who are also dating. So we have boundaries related to, you know, our space, closing our doors, having time where we're intimate or having sex together, or time where we're just quiet, versus time out in common areas, there are those boundaries that we've learned over our half a year a year together to ensure that people feel comfortable, feel a sense of agency, feel safe, and are not over stimulated. A lot of us in the house. Do consider ourselves neurodivergent as well. So some of that I didn't necessarily have the agency or understanding to verbalize, and we're still having conversations in these last coming weeks, this last month, where I'm recognizing like, Oh, I'm being tense around Rene, and I don't have to be I could actually just realize that I have a need I need to make clear, but a lot of us aren't used to creating those boundaries that may disappoint or make people feel uncomfortable without taking that emotional burden on ourselves, as though it's our our responsibility to make them happy. But we're not very good. I've heard this is something from online, but I've heard we're not very good people pleasers, if we're doing that, we're doing that, because we're not really pleasing

Anita Rao 21:23
ourselves. You mentioned the structure of your house and that you are in a committed relationship. You're recently married, congratulations. Thank you. I would love to talk about the intersection of EDs, symptoms and romantic relationship, and I'm curious about how your symptoms and the way that your body moves and changes on a day to day basis have shaped what you want and need from a romantic partner in a physical relationship.

Soph Myers-Kelley 21:51
Absolutely, I think the way my symptoms showed up initially in adulthood also made it more difficult to talk about when you were talking earlier about generational differences, about pain, my first primary pain as an adult was vaginal, pelvic floor, anal, like you don't talk about that stuff. It's meant to be shameful. Something's wrong with you. And then a lot of people get told by health providers like, drink a glass of wine, or, you know, I guess your boy, your boyfriend, needs another girlfriend, like whatever it is. So the positive side of that was people who were willing to date me had to be vetted, or, from the get go, needed to be on the same page about some things, and so that meant that I have dated seriously only people of substance, people who recognize that my disability doesn't make me a deficit to society or when I when I have to take more vacation time. So there is caretaking involved in my relationship. There are things that Adrian does for me that I can't do for him. But what people don't think about with an inter abled relationship is that's never it's not 5050, with an able bodied relationship, either somebody does the laundry and somebody does the dishes, someone does the yard work, and someone their shoulder hurts a little, or they have they're a much better listener and they're there for the person when they have a bad work day. That's it's all about give and take, and we give and take in a wonderful way, and that's true as well with sex and sexuality and romance. There are days when I don't have energy endurance, when I am tired, and I can only give so much in a sexual capacity. Yeah, I

Anita Rao 23:42
Okay. Your mom is it? Your mom is in the room. We're acknowledging that we're talking about this with your mom in the room. I'll

Soph Myers-Kelley 23:48
have like, an active role in sex with Adrian, and I'm doing things are in a different position that some people might not assume, looking at us be more on the top side of things. But I do that stuff in a way where he respects how much I can provide. Yeah, and that we change and adapt things or use aids to make it work for us. And that sometimes means that, you know, we're not both going to orgasm, or that's not the point. Or sometimes it's just we're being close to each other, and the sexual content doesn't have to have an end goal. It doesn't have to be a purpose. Besides, we're together and we love each other, and we like touching each other, we like kissing, and so that's how we've adapted, but with the right partner, it doesn't feel like an adaptation. Yeah, you're accepted for who you are.

Anita Rao 24:32
Rene, I'm gonna turn this to you, and I'm curious, knowing what you know now about EDS, how when you look back, do you feel like your symptoms have shaped your ability to connect with pleasure in your own body?

Rene Myers 24:46
Oh, my due to a lot of the medications that I'm on, yeah, no longer have some of those feelings. I also don't have a person in my life, not that. That's required, yeah, but I don't have a person in my life, but when I did, this is where I will say to you when I was diagnosed, and since then, there have been many times when I've looked back on all the experiences that I did have and have said, If only, if I'd only known, if I knew that there was this aid or that person, or, you know, getting emotional, talking about it. But that's 60 years of my life where I and and Soph will tell you often, I will say I don't have regrets, because you can't go back and change things, but I know that my life would have been drastically different, and had I had the tools and the knowledge that I have now, and that self has at a much younger Age. And by no means am I saying Soph is better off than I am, because self will have his own physical challenges as he ages with EDS. But the advantage Soph does have is the tools and the knowledge to address those now that I did not have.

Anita Rao 26:19
Is there a particular moment that comes to mind of the like, if I had known, then this would have been different.

Rene Myers 26:27
Yeah, I had both knees replaced before I knew. I had EDS. One of the first signs that something was really wrong was when I went to my one year checkup and said my left knee is already having problems. My knee was coming in and out of its socket, and I could not understand that. And later, when I learned I had EDS, I went and did research on knee surgeries and a knee replacement surgery on a known person with EDS is much different than a person that is not known to have EDS, and the outcome is different. And here we are, less than 10 years later, maybe seven or eight years later, and it's a short distance for me to be in a wheelchair. Yeah, I'm already using a cane. I am expecting a walker to show up in my home soon, and and then the wheelchair is next, and I wonder if that's what would have happened, yeah, had I had the knowledge and the information that I have now,

Anita Rao 27:38
what is it like to hear your mom talking about this.

Soph Myers-Kelley 27:42

It sucks. Yeah, I can't do anything about it. She suffers every day, and now, with the information that I have, I know how much of it could have been preventable if a different conversation was had with a medical professional, or if she was in front of the right provider. There's still so much we don't know, but I know there's so much that could have prevented, even if we just look at how many times she was blamed for her weight and that being the primary issue, if we could have just changed that the amount of self joy, self pleasure, of being in a body, of wearing clothing, the most simple things, or again, we react to medications differently. So all the terrible effects that she's had from trying different medications that could have been avoided, or just recognizing that some medications were going to be quite sensitive to and need a very low dose, I try to pass on the tips I have to her, and I hope that they affect her positively. Now that's all they can do. You're

Anita Rao 28:43
coming at this from, obviously, a very personal place of your own story, a personal place of witnessing your mom's experience. But you're also a medical librarian, so you have you know how to read medical journals and papers, which is a gift in itself. And I'm curious like how sitting at that intersection has shaped how you make decisions for your own life, like understanding the limitations of medicine, also wanting to advocate for yourself having this personal experience, like, how do you make the choices to manage your health and your day to day because of that kind of combined knowledge.

Soph Myers-Kelley 29:22
Oh, goodness, I feel I was born as a medical librarian from this chronic illness journey. As an adult, I felt like it was baptism by fire type thing. I was going into library school as I was getting some of these silo diagnoses and just piecing together, I did a project on volvoddenia for my library school master's degree, which involved looking at different databases to see what information was out there. I wanted to look at volvodina and chiropractic work, or volvodina and acupuncture, and realized that was so niche and there was nothing out there. There, I expanded it to volvodina, and then I found still so little. It was depressing and disappointing. Yeah. And I was like, wow. Well, we need to do something different. So looking as a medical librarian, I've learned how little health professionals know, in some sense, how much we have left to learn. I've also learned how fallible we are as social creatures. When health providers learned I was becoming a Health Sciences Librarian, they might give me additional information because they know I can process it. Yeah, but it also disappointed me, because I know that information isn't available to everyone else, or that they don't have the scaffolding and support that they deserve to understand that information. So I felt privileged, and I also felt cursed, frustrated that this wasn't available to everyone. So I take someone's information. For example, yesterday went to a dermatologist. She gave me these three or four recommendations, and then she knows what I do, and she knows she doesn't have the expertise with EDS or with the testosterone I take, or whatever it might be. And was like, I was like, I'm gonna go research this and figure it out. I'm gonna talk to my trans doctor and see if he has any information. But ultimately, I'm coming back with here's what I think should happen again. I wish that my professionals had the expertise to support me. I know that many of them don't, and my primary care providers said, If I can manage what you're dealing with right now, if something big comes up, I may not be able to help you, and that is a little bit terrifying. So the long story short is I believe in the providers, and I also believe in patients who often see these trends in their chronic illness communities before research is able to be done and be processed and published.

Anita Rao 31:35
Coming up next, how holding all of that responsibility for their own health and each other's well being has affected Soph and rene's mental health and what practices they've built to find joy in their bodies while living with chronic pain. We'll be right back.

This is embodied. I'm Anita Rao. We're talking with Soph Myers-Kelley and their mom, Rene Myers, about living with Ehlers Danlos Syndrome. It's a connective tissue disorder that manifests in the day to day for them, with an array of symptoms including hypermobility, dislocated joints and chronic pain. They got diagnosed a year apart. Soph was in his 20s, and Rene in her 60s, and they moved in together last year. I want to talk about mental health a little bit. You know, there's an element of heaviness to having a chronic condition and for you, so to watch how your mom's body has changed and wonder what that might have in the future for you, for you Rene, to grieve the life that you may have had if you'd known this information earlier, like I guess, where are you right now in your journey of acceptance of your body's limitations and your mental health orientation around having this chronic condition?

Rene Myers 32:57
I'd say that with five years now of having this knowledge, I am closer to having acceptance of it. I can continue to ask myself the what ifs, but it's not going to change anything. But living with this controls everything in my life, in addition to or including, when my life is done. I'm a death doula, and so I have an acceptance and an understanding of the dying process, and I'm comfortable with that, but it's easier to be comfortable with it, when you were talking other people and when it's yourself, you know, that's a unique experience. That's a constant grieving process. Yes, grieving never stops. And you know, and it might be very small on most days, but every now and then, there's a reminder that, hey, you have this, and because you have this, you know, here are a list of the things that you have to adapt to. And I think people who are able to make peace with that are better off. But the grieving does not ever stop. That's not an easy part of

Anita Rao 34:15
this. No, not at all. And I mean, there are moments along the journey. So if I know that you have had your own ups and downs in terms of acceptance, and at one point, I think in 2020, or so, you wrote a will, and I'd love for you to maybe take us back to that point and kind of where you were in your thinking about EDS then and how things have shifted for you.

Soph Myers-Kelley 34:38
Yeah, I'd written this will about what I wanted to be done with me if I wasn't able to speak for myself medically, and what would make for a successful and happy life for me, and under what conditions would I prefer to be gently let go, if there was a medical situation where I were at risk of dying, or I was in a coma and. And at the time, like physicality was very important to me, being able to dance those sorts of joyful, exuberant movements. And I realized, looking back at it years later, seeing the document I saw, that I was living the life that at that time I would have thought wasn't worth living, where I would have rather been dead. And that was such a powerful reflection on the resilience of the human spirit. We grieve. We grieve all the time. I grieved my ability to maybe be in a dance company, or to travel abroad and teach English in five countries, or all these dreams I had, I had to adapt them. And at times it felt deeply painful, like metal grinding against each other, being molded into a life I didn't want to live. And then I found joy and daffodils and sunflowers and beautiful things grew in the cracks of my despair. I found I wasn't able to dance the way I wanted to, but I still was able to move. I find I can't sing as much as I want to, I have to recover for days afterwards. In my jaw is in excruciating pain, but it's still worth singing. I have to be more deliberate with the choices I make today, but it's still worth a life that I want to live and where I found deep love, community, romance and yes, pleasure in my body, even in the middle of the pain, that was a huge lesson for me in my life, to accept whatever I have and to rise to it, and to live with the burden that I've gotten from this genetic condition, that it's still a life worth living.

Rene Myers 36:34
Rene, when I was speaking about the grieving, it occurred to me, I don't want the listening audience to think that this is, you know, the end of everything, of course, because it's not you can make that choice. You know, to say, You know what I'm done. I'm not getting out of bed again. I'll see you whenever I see you. But we have not made that choice because we're not dead yet. I have a T shirt that says, and, you know, finding your joy in the cracks of the despair is an absolutely perfect description. I don't do the things that I used to be able to do with my body. I don't I don't look to things that I wanted to do that I can't do anymore because I've replaced them with other things.

Anita Rao 37:24
What are those things? Now? You

Rene Myers 37:26
know, I always wanted to paint. I never painted until August, and now I paint almost every day, and I love it. It brings me joy. And I have to say that focusing on those things that bring me joy is what has gotten me this far. You know, I love sitting with people and just hearing laughter, you know, I love sitting out in my backyard by myself. We have this beautiful backyard, and now I can, I can sit out there and listen to the wind blow through the trees, you know, and that that is joyful to me, and I love reading. So I'm self is always saying, You should read this book, you should read that book, you know, the benefits of having a library. Or here's this great podcast, you know, and there's this, and I think maybe Soph would be better at explaining this, but we both live with this philosophy of building a ladder. Building a ladder came from, say, the name

Soph Myers-Kelley 38:30
Simon and Martina Eat Your Kimchi YouTube channel.

Rene Myers 38:33
Martina went through the process of chronic pain and not understanding her body, and then eventually being diagnosed with Ehlers Danlos Syndrome, and she has this philosophy called Building a ladder. And it's like, Yes, I could stay in bed today, or I can do one thing, and that one thing is the bottom rung of the ladder, and maybe that's I'm gonna get out of bed and I'm gonna brush my teeth and I might go back to bed again, but I climbed the first. I climbed the first wrong. And you have to see that as a success, because what is your alternative? Yeah,

Soph Myers-Kelley 39:09
she talks about it from a mental health standpoint and or from a physical standpoint. So also, if you're in a deep depression pit, you wake up and you feel terrible and you don't want to do anything. Can I get out of bed? Can I put on makeup or an outfit that makes me smile or that I think a kid will walk down the street and laugh and smile. Can I make a joke about what I'm feeling and listen to beautiful music, all little things that build your ladder out of that deep pit of chronic pain or despair or anxiety. It's what gets us out of really hard days, because the pain doesn't go away. Some days it's easy, and some days you need to do that step by step so that you can enjoy your day.

Anita Rao 39:46
I want to ask about drag, because I know that's a recent space of play for you. What has the process of doing drag kind of taught you about your physical body, and what have you been able to explore? Or through that space. Drag

Soph Myers-Kelley 40:01
is so fun. It is, of course, a queer and trans friendly community. It's also a very disability friendly community. You have a lot of neurodivergent people, artists, creatives and people with chronic pain. You get a lot of flexible, bendy people who may have connective tissue disorders. So it's been a wonderful place to connect with like minded people, to create art, to sing, to dance, to wear fun costumes and play with gender. Play like I'm a trans man, but I can be machismo, or I can make fun of masculinity or make fun of tropes, and that's delightful. And while I can't do maybe some of the things I used to do in high school, I can still figure out. How do I do a split effectively? Evie, oddly, is a drag queen with Ehlers Danlos Syndrome, and seeing her on Ru Paul's drag race was so inspiring and exciting to say I have these limitations, and I might get injured doing some of these things I love. But what can I do to navigate and mitigate the damage and to still create art and create a piece that people love, that people respond to, where you connect with community,

Anita Rao 41:06
hearing you talk about your experience, watching a drag performer with Ehlers Danlos makes me think about the book fourth wing that I have been reading that series, and the protagonist has EDS symptoms, and There's so many interesting moments in that book where hypermobility can mean power and precarity, like, within the same scene. So, like, she'll be able to dodge something that someone is throwing at her in a very particular way, because she's hypermobile, and she can bend and then she cracks a rib, or she breaks something, and she needs a certain kind of, like, different healing mechanism. So I'm curious about this idea of like precarity and power in your body with EDS. If that resonates for you at all. Yes,

Soph Myers-Kelley 41:49
I see us as canaries in the coal mine in society. We have these sensitivities and what could be seen as weakness in a society that doesn't accommodate us. But I also see us as singing and shouting that there could be a better world where all sorts of people, whether they're pregnant, people who need access to an elevator, you know, someone who's aging and has natural deterioration of different parts of the body that needs an accessible wheelchair, An accessible restaurant like I see people with EDS, people who are chronically ill, people who are disabled and as neurodivergent that they don't need to be seen as weak. These things that I have, that have also given me so much pain, have at the same time driven me to my purpose.

Anita Rao 42:35
Rene, what comes up for you when I say that? Do you experience this duality in your body. Of the things that sometimes make me feel precarious also make me feel more powerful in certain moments,

Rene Myers 42:49
I can explain how that's kind of manifested for me is similar to self. I have learned to find my voice more that can be quiet and feel guilt and do nothing and stay in bed, or I can speak for what my needs are and what the other what other members of the community. I can speak for them if they can't speak for themselves. When it comes to EDS, I can speak for my child. I can educate other people about what EDS is Soph and I have both educated doctors, yeah, so it is a power. Yeah, it sucks to have it. There's terrible days, but you can again choose to live in that terrible day, or you can choose to do what you can. And for me, it it was finding my voice.

Soph Myers-Kelley 43:40
I want to make a quick note that there have been days or weeks or months where we're so incapacitated with pain, so I don't want to belittle anyone who's listening, or anyone who's listening and has a family member or a friend who has to stay in bed or who can't hold a job, because each case of EDS is different. It's the you met one person with EDS. You have met one individual with EDS. Some people have feeding tubes. Some people are in wheelchairs permanently, and some people do need to stay in their homes. So not to judge that there are other situations where people are doing the best they can, and that might be that they stayed in bed, yeah, for the day, or they got out of bed and had breakfast, and that was what they could do.

Anita Rao 44:22
I want to end by giving you all a moment to kind of reflect together. Is there a question that each of you has for the other that you would like to ask in this moment?

Soph Myers-Kelley 44:36
What do you what do you think about sharing the things that we admire about each other, or the things that we've the way we've seen each other grow out because of this condition, or after this, having this knowledge,

Rene Myers 44:48
when I think about you and the things that I'm trying to say, I like everything about you. I. Oh, but I would, but, you know, I have seen you become empowered. I have seen you get to that I'm mad as hell, and I'm not going to take it anymore stage, which is a reference to a movie back in like, the 80s. But you know, yeah, I've seen you get to that point where you could continue to be angry, or you could move on your anger and act on your anger and use your voice on your anger and make a difference for yourself, but for other people too, because being a librarian is not just for you, it is for other people, and you have helped other people so many times. And you come home and you tell me, today, I had somebody ask me about this, and I was able to say, Hey, have you thought about that? And you've pointed them gently in the right direction, where you've made a difference for them in their lives. And I'm so proud of you when I see you do that, because you took what could have been an awfully ugly situation and you're using it to help other people. That's who you are. So that's what I'm most proud of.

Soph Myers-Kelley 46:11
Thank you.

To talk about my mom's growth, it's the same exact thing she got into union work. After EDS, she got her voice, she advocated for herself and for others, and she started sharing resources with other people. She went from, you know, I have all these things, but I don't have the words or the knowledge to share my experience with other people, to be able to be on this show with me and publicly talk about situations and experiences that, again, would have been shameful or embarrassing, socio culturally, to discuss publicly. So I'm extremely proud of her and how much she's grown and how much she's continuing to grow. Now as a painter, now as someone who lives in a commune like style, living situation, as someone who is starting to work with meat, rabbits and chickens, and I'm very proud of you, always growing and changing. Thank you.

Anita Rao 47:20
After this recording, as we were walking out of the studio, I learned that Soph and Rene have matching tattoos on their hands of the phrase soon dead. So I wanted to hear that story. Why did they both decide to get those tattoos?

Soph Myers-Kelley 47:38

We were listening to an international Buddhist conference virtually during the pandemic,

Rene Myers 47:44
and we heard one of the presenters tell a story.

Soph Myers-Kelley 47:48
He was a newscaster before he meditated or was Buddhist. He was, you know, live national and having a hard time with that. So after a live panic attack, he began exploring meditation, Buddhism. His wife got into it, and they had a shared teacher. And when they would go to that teacher with marital disputes or other issues, that Buddhist teacher and mentor would laugh at them and say, soon dead. And

Rene Myers 48:16

eventually they learned that soon Dead was his way of saying, don't sweat the small stuff. And is that really what you want to be spending your time on?

Soph Myers-Kelley 48:30
Yeah, I've heard from another person something along the lines of, is this problem going to be a problem for the two of you in 200 years, or 500 years, we look at these tattoos and think, before I know it, I'm going to be dead, so I want to be present and be here for this life.

Anita Rao 48:45
You can find out more about Soph and Rene and all episodes of embodied the radio show at our website, embodiedwunc.org Today's episode is produced by Kaia Findlay and edited by Amanda Magnus. Nina Scott is our intern, and Jenni Lawson, our technical director, quilla, wrote our theme music. This program is recorded at the American Tobacco Historic District North Carolina. Public Radio is a broadcast service of the University of North Carolina at Chapel Hill. I'm Anita Rao.