Episode 9

Published on:

14th Mar 2023

Living with Ehlers-Danlos syndrome and how to cope with illness of any kind with Kathryn Hofstetter- 9

In this episode, Kathryn and Boots share stories of how they manage other people's reactions to their heart journeys. Kathryn also shares her journey with Ehlers-danlos syndrome, POTS, Tetralogy of Fallot and Fibryomyalgia. If you have been wondering how to talk to someone dealing with a life changing illness or if you are afraid to share your story, this episode is for you.

Website: The Heart Chamber (theheartchamberpodcast.com)

Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)

The Heart Chamber (@theheartchamberpodcast)

Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director

0:00 intro 2:00 Welcome Kathryn! How Boots found Kathryn via social media 3:00 About Kathryn and her Tetralogy of Fallot and craniosynotosis journey 4:20 She thought her medical journey would be over early in life but she continued to struggle with touch and cyclic vomiting syndrome 5:00 Diagnosed with fibromyalgia and arthritis 5:40 and then a friend mentioned Ehlers-Danlos syndrome to Kathryn which she took to her doctor. The doctor immediately agreed and diagnosed her on the spot at age 22. It all made sense. She was struggling with POTS as well as hypermobility. Covid 6:40 Kathryn contracted Covid which negatively affected her medication, Midodrine, from treating her POTS 8:50 Ehlers-Danlos syndrome diagnosis 10:30 Fibromyalgia diagnosis 12:00 Kathryn’s biggest shift with the medical community happened this past year after having both hips reconstructed due to collagen malfunction. 14:15 A heart MRI is ordered at UCLA and her life takes a turn 15:50 She learns she has pectus excavatum at age 25 which impacted her right ventricle 20:00 surgery is not possible to correct the pectus excavatum 22:00 Her struggle with endometriosis 24:00 The opportunity to practice radical acceptance over and over again 26:00 finding her specialist at UCLA 28:00 “but you look so young and healthy” 30:00 advocating for mental health therapy 31:00 confronting our mortality 32:00 What do you need to hear instead? 35:00 “I don’t know what to say but I am here with you.” 37:00 Boots shares her experience with meeting others where they are in their own journeys 39:00 Kathryn shares her struggle with working with others older than her. 42:00 “I’m no longer threatening. Now I am an inspiration.” 43:00 “I can’t control other people’s perceptions of me.” 44:00 Why Kathryn “came out” about her medical journey 46:30 Her life as a horse rider and how her condition affects her riding. 48:00 The power of sharing our stories 49:00 Boots talks about the power of grace


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An herbalist for horses as well as humans alike. Catherine happens to also live with a connective tissue disorder called Alors Danlos Syndrome, which caused her to need a cardiac surgery called repair of Tetrology of Fallot at just one month old. She's also needed many procedures since then. Today, Catherine is using her story to help raise awareness for para equestrians with invisible disabilities and illnesses with the equine industry.

Catherine and i's [:

It's a French term. We also talk about how to handle conversations with people who just aren't in our shoes. Meaning our shoes of having a congenital heart defect. It's a really powerful conversation. I found a lot of healing through this conversation, and I hope you do the same. If you like this conversation, I encourage you to go back and listen to all the other episodes on the heart chamber.

can go to the Heart Chamber podcast where you can leave me a note or even leave me a voicemail. I'd also appreciate it if you'd consider making a donation. You could also do that on my website. Your donation helps me keep this podcast going thank you for listening to today's episode. I hope you find it helpful. Let's get right to it.

ighton: welcome Catherine. I [:

And so one day I just went to Instagram and typed in the hashtag open heart surgery and I found Catherine and she has quite the story. I'm so glad she said yes, even though I don't have much street credit until about now. but she said yes, and we've just become instant friends. And so let's welcome Catherine.

Catherine, thank you for being

old and I'm originally from [:

I also had repair of cranial synosis at infancy. my repair of Tetrology of Fallot happened when I was a month old. And, the repair of cranial cytosis happened a few weeks later. And, that was something that, You know, we, we thought was sort of a fluke. There wasn't any family history of that. there was really no rhyme or reason.

t was gonna be visits to the [:

But really it was sort of gonna be a part of my very, very early history and not something that was that relevant anymore, but happening all alongside. That was that I continued to have these really. You know, this big long list of debilitating health SY symptoms and, you know, that I was, I was really struggling and I was really sick, and I would even, you know, as a tiny little toddler and, you know, little child go up to my mom and tell her, you know, that my skin hurt or that my eyebrows hurt and, you know, or we'd call it tender touch when everything hurt, you know, the fabric hurt, you know, to touch me on my clothes and things like that.

and so I was always just sort of told like, you're a growing girl. That's part of it. And, you know, then I developed something called cyclic vomiting syndrome, where, I would spend hours and hours and hours all night long. It, for me, it was one 30 in the morning. I, every day I would wake up and just be sick for hours.

that lasted like five or six [:

Eventually I was diagnosed with fibromyalgia and then I was diagnosed with psoriatic arthritis and I had all of these kind of free floating conditions. That sort of one after the other popped up and it was sort of like, well, we don't really know why. And I switched birth control options several times and that sort of would make things ever flow.

But there was no real reason. And if I did, you know, hormone testing, everything came back normal. and so then it was actually when, a really, really close friend of mine said to me at one time, um, after knowing me for, gosh, almost 10 years, said to me, you should consider talking to your doctor about something called ER's Danlos syndrome.

t something at least similar.[:

And so I went to my doctor and pretty much took them an eye blank to go, oh yeah, absolutely. That's clearly, that's the reason and it's

Boots Knighton: how old were you?

Kathryn: I was, I think 19 at the time, 19 or 20. Um, and actually I was a little bit older than that. I was maybe 22. And, you know, I'm, I'm hyper mobile and, um, have, you know, easy bruising.

I also have postural orthostatic tachycardia syndrome or pots, um, which is a fainting disorder and blood flow disorder. and that was something I was able to be medicated for, for about a year. And then unfortunately, I, during the pandemic had covid and that caused that medication to not work anymore.

and so, you know, yeah, it's been

really challenging.

Boots Knighton: I did not know Covid could do that.

Kathryn: Yeah, my cardiologist said that a lot of people within my age demographic who were taking that medication, it's called mirin. Um, were taking it for pots. were failing to see any kind of benefit from it after contracting covid.

far didn't have any patients [:

And that was something that, causes random onset blackout. and that was starting to happen at one point, like while I was on my horse or while I was driving. Um, and it would be really random. And that also has happened my entire life. And I was always just told like, oh, HUD rushes are normal. But it was things like, you know, as a small child, the term that, you know, my, my, cause I was raised by a single mother and, um, You know, was so supportive through everything. And so we had all these little like short hands that we would use. So there was like tender touch or one of the things that was an expression was like I would go noodle boned. And so I'd go to hug her and she was thinking I was going for a normal hug. And I'd kind of start that way.

r a long time, you know, she [:

And then I would go like kind of nonverbal when it would happen. And so I couldn't express, like I can't see, I can't hear. And it would take a while and eventually my ability to communicate would come back before my vision or hearing. And I would say like, I can't, I can't see, I can't move, I can't whatever.

And she would kind of, you know, just stay with me. And it was always just like I. These weird combinations of quirks that I was always just told, like, it's probably normal. And they were really debilitating and challenging and with things like the joint pain and the hypermobility and you know, I'd go to work with my horses and go to Garth up a saddle and the effort of growthing up a saddle would make me dislocate my ribs, you know, and that would happen all the time.

r things I have going on our [:

And E'S Danlos syndrome itself. A really, diverse condition. You know, there are people who, suffer to the extent that, you know, they have it of the blood or, you know, on levels where they have feeding tubes or their, you know, organs are collapsing at a really rapid rate. You know, there, there are people who have, manifestations of it that are not invisible.

and then there are people who, you know, carry it like my mom, who, you know, bruises really easily and that's it, you know, and that's the only way it affects her is that she bruises really easily. and it seems like it can sometimes sort of skip a generation. And so, you know, my grandmother had it worse, you know, than my mom and more like I do.

but I'm the only member of our family that's

Boots Knighton: And your grandmother, if I may,

Kathryn: mm-hmm.

Boots Knighton: oh, sorry for interrupting, but

Kathryn: Oh, no. No

Boots Knighton: sure your grandmother, was there even an awareness back then

been even been given a name? [:

Kathryn: it hadn't. And she, at least not to my knowledge, I'm, you know, totally prepared to be fact checked on that . But, as far as I know, it's, it certainly was not a common diagnosis. If it was something that had been, established as a diagnosis yet. I mean, it, this is something that even in my lifetime, I mean, I remember when I was diagnosed with fibromyalgia and that was something that was.

Kind of considered like a trendy diagnosis at the time. And what was challenging about that is that I do have fibromyalgia, and it is very severe. And part of the reason that it got discovered was because it was sort of this more popular diagnosis. And so then I went through this whole period of people telling me like, oh, well you've only been diagnosed with that because it's so popular and everyone has fibromyalgia right now.

Except the reality is I do. And you know, I think similar to people who have life-threatening celiac disease, right around the time that, you know, gluten awareness and gluten intolerant, you know, intolerance awareness became a thing. You know, there was this sort of tongue in cheek like, well, everybody's, you know, allergic to gluten.

ife-threatening for, it's an [:

And they didn't know. Now everyone knows what it is and no one knows what Ella's Danlos syndrome is, and it's like slowly catching on. Um, and the same thing is true for pots. And so I'm sort of noticing the medical field progressing in that way, where more of these things are becoming, you know, commonplace and understood.

And I know there's, there's a viewpoint in the elders downloads community where, there's sort of a. Group and communal identification as you know, zebras because there's this term in the medical community when, you know people are in medical school of when you hear hoves think horses, not zebras.

other first things that it [:

It's something that's, you know, much more complicated than that. And so I also working with horses professionally have found, you know, finding myself in that particular community of people who have sort of an equine, you know, self identifier is something that was sort of a universally interesting coincidence.

ear. And that was because. In:

Boots Knighton: Yeah.

Kathryn: which hospital visit was that?

but yes, it was the summer of:

Boots Knighton: And how old were you at that time?

that, and that was all again [:

Condition, where there were structural, you know, issues in how my, my skeleton was put together. and they basically needed to go in and shave off the whole top of my femur, the whole inside of the acetabulum and bring back and re reconstruct and reshape my hip socket and then effectively lace back together.

The ligament that holds your hip socket shut because it had torn on both sides in various places, all because of the collagen dysfunction. So, backing up for a moment, e's Downlow syndrome is a collagen production disorder. And so what that means, you know, collagen is that, you know, wonderful substance that holds all of your joints and all of the tissues in your body together.

And when you have issues with the pro production of that, then you start to see either hypermobility or, you know, various kinds of dysfunction in those structures in the body. And so for me, one of the manifestations of that was my hips. And that's something that on my matrilineal line has been true.

n, you know, replaced or are [:

I had an incredible cardiologist here, at UCLA who thought, we don't have any record of an MRI for you. I would like to put you in an MRI and just see what's going on. Because there is something that can happen to the, the aorta in ls, Dan Los patients where, it can, basically it can collapse. And I had been told, and my, my mom had been told to when I was born that one of the issues with the Tetrology of Fallot was that I had a collapsed aorta and that they had to put a ring around my heart.

or around my aorta rather. and when they went in for the mri, they didn't find any history of that and they thought that maybe one of the things that happened is that the ring maybe just dissolved. And so they couldn't see a history of it. But I also had holes in my heart, that had to be repaired.

itially were concerned about [:

And I'm gonna pause before I go into what that is and say, this was the first time in my life that anyone had thought about putting me in an mri. And that was something that became a much major, a much more major issue. and the fact that I've gone through all the different things I've gone through and had all these diagnoses and that no one did that, you know, when I was a baby and I had, you know, I was 1997 when I had my first open heart surgery and, you know, at the time the MRIs, you know, were not quite as well made as they are now.

You know, they were a newer thing. And so I could understand how as an infant, you know, they didn't wanna do that, they didn't wanna risk putting my very, very fragile body through something like that. but then they just never did it. and that was a really kind of horrific oversight because I have something that they discovered called PTU excavatum.

d PTU excavatum is, uh, most [:

that was just earlier, you know, gosh, probably almost a year, year ago now. that I had that done and I knew, oh yeah, absolutely.

Boots Knighton: hang on one second. So as you're finding out about this, like did you, is it obvious from the outside?

Kathryn: Mm-hmm. . Yeah. And it was one of


Boots Knighton: you look different on your chest?

Kathryn: sort of, so I didn't realize that I did, I have, my, the bottom of my ribcage, you know, is a little bit more up raised and kind of sticks out. And I was always told that that was because when I had my open heart surgery, they broke my sternum and opened my chest cavity up this way.

viking ritualistic sacrifice [:


Boots Knighton: just becomes a part of our lives as, as heart

warriors. That's

Kathryn: well. And I, I also have pretty intensive, historical education from, as a result of the different kinds of performing arts I've done. So I'm very interested in that sort of whole era of history. And so what I learned about that, I was like, Hey, wait a minute. me too . That's what they did to me.

But, you know, the point being when they wired my sternum back together, afterwards, I was always told that that just kind of, because of that caused my, my sternum and my ribcage to be up raised a little bit. And so my sternum doesn't sit as flat and it kind of comes up and out at the bottom, you know, it's shaped basically like this rather than being like this and protecting your chest cavity.

in a woman's body, you know, [:

but I was always just told like, that's cuz that's the result of your surgery. And I also through, through these different careers, have pretty intensive anatomy education, specific to horses. However, their anatomy's actually very close to human anatomy. particularly the anatomy of their heart.

And when I had this appointment with my cardiologist who told me about the results of my mri, it was via Zoom. And so she was able to go in and show me the video of my MRI and everything and show me the sort of 3D mockup of my heart and all of that. And it was like an exact replica of my heart, not just like a heart.

n't look small and shriveled [:

That should be the biggest part of the heart, not the smallest part of the heart, what's going on? And that was where she then told me that because of the cactus excavator, my sternum is pushing on my heart. and that my body's done kind of an incredible adaptive thing, which is to just shrink the part of my heart, my right ventricle that it's sitting on so that my heart can continue to beat being smooshed by my sternum.

And that's a really wonderful thing. It also is part of why I have pots, because my heart is the wrong shape and wrong size and kind of literally marches to the beat of its own drum. and so that means that its ability to effectively pump the blood correctly through my body and get oxygen to all of my body is not very good.

on-starter for me. you know, [:

Boots Knighton: because of your connective tissue.

Kathryn: So the thing is when it is in young children, and again it's, I mean she said there is not even really any literature for the specialists that I know to refer to, to study something like, you know, the treatment you would need being done on an athletic adult female. that's just not something that we even have any history of.

So you would be kind of a Guinea pig. and the connective tissue disorder means that the ability for them to. Get the, basically it would be a big steel bar that would be screwed to the inside of my ribcage on one side, sort of laced through and then screwed to the other side. And like internal braces, that's like a big kind of like, a smaller version of like a shower grip bar, but sort of ribcage shaped.

So, you know, screwed into either side of my

Boots Knighton: my gosh,

uncture basically that's out [:

the other thing is I would need to be on opiate level painkillers the entire time the bar is in and it would have to be in for two to 10 years. And then after all of that,

Boots Knighton: Oh my gosh.

Kathryn: is highly likely that because my bones are done growing, cuz I'm not a five or 10 year old boy, that my ribcage would just go right back to where it was and not stay out.

The other concern is that if in the time while the bar was in, that allowed my heart to adapt and grow to how it should be, and then if they pulled the bar out and my ribcage goes right back, it would immediately just crush my heart, in a way that I may not even survive surgery. And so that's really kind of not an option.

Um, as much as it is [:

I also, because of the Zalo syndrome struggle with things like endometriosis and chronic ovarian cysts, which was also partially caused by a reaction to a form of birth control that I had tried it one time. and so that's been a really kind of difficult challenge for me to navigate, was learning that having children naturally is something that I would be very limited in my ability to do if I could do it at all.

rticularly because I started [:

Professional journey to become a full spectrum doula, basically the year prior to learning all of that. And that's where, from doing that, I, I pivoted to just working as a reproductive health doula, because I just didn't feel like I was in the space to be comfortable working on the birth and postpartum side of those things.

It was just, you know, sort of too painful for me and I brought too much of my own material to it to feel like I could hold that container for anyone else. but yeah, I

Boots Knighton: Wow. That takes an incredible amount of wisdom to know, like where. , you know, where you can be of service and where that needs to stop.

Like a lot of times people just keep choosing their trauma over and over again. And it just sounds like you, even at your age, you're, you said you're 26 now, correct? Yeah. And so are, I mean, I think back to when I was 26. I'm almost 20 years. I'm 18 years older than you, but I I did not have that wisdom then, that you have already. So,

Kathryn: you.

Boots Knighton: that's just [:

Kathryn: Yeah.

Boots Knighton: to practice, to practice radical acceptance over and over again.

and to just come back to this truth of that, you're a miracle. I mean, we're all a miracle. I mean, I think about the miracle of life, right? And. you know, there sounds like there were some missteps in the medical community. It's almost sounds like you've been, like training the doctors as you've been going through all of this.

You know, like they are almost like learning your, you as like this, they're taking your case and learning from it and you're like their greatest, one of their greatest teachers. I mean, that's what I'm hearing through all of this

Kathryn: can be really scary.

, you want to, when you show [:

And I can tell you, like with my diagnosis two years ago with the myocardial bridging, I mean it really stumped the Intermountain West, you know, and it's still believed to, to not cause problems, in a lot of the cardiology community. And Stanford University is thankfully starting to debunk that, but, , are you?

Yeah. And so is ucla, I hear. And so like, do you have, I have so many questions. , so like, let's just start with the most recent, like, do you have a, specialist that specializes in your syndrome, like that you can go to, that you feel solid with

Kathryn: For the most part, yes, I do. sort of, unfortunately. I wish the answer was just a straight yes and they're amazing. And here's their name. Uh, sadly it's not quite that straightforward,

Boots Knighton: wish, I wish that for

logist, um, Jeanette Lim at, [:

and UCLA is interesting because they, their adult congenital department is very limited beyond a certain point. And as soon as you need a specialist, you go over to the pediatric congenital department. and so my surgeon that did my pacemaker, is somebody who. Didn't, as far as I was aware, have any real understanding in terms of ER's, Danlos syndrome.

Like he wasn't a specialist with that. He kind of, he knew what it was, but it was one of those like, so walk me through what this is when we, you know, first had our, our initial meeting and I had to kind of break down all of those things for him and, you know, he was able to of course, speak extensively with my cardiologist about it.

by saying, no one's ever put [:

And there are things that can happen for ER's, Danlos syndrome patients that we can only find out from an mri. So I wanna have that looked at for you and get a baseline and understanding and all of those different things. And if she hadn't done that, then I, there was, there's a lot that I wouldn't know.

And I think that that was where. The the things that she was able to uncover for me, what were, what put me into the category, no longer of just like having some chronic illnesses that have some complications and into the, no, I have full on invisible disabilities and these are, I am, I am now in that community and I've, I've been escalated to that tier of things and, and that was really hard for me to come to terms with because one of the things that I have been met with my whole life, and this has been sort of my source of greatest angst and also sort of this weird pride point coping mechanism kind of thing.

with and have my whole life, [:

Like, what does that mean? why do you, why does your perception of disability have anything to do with conventional attractiveness? And that's, you know, was a pretty pretty inflammatory thing for me for several days after that. and took a lot. But I've, I've had such an endless string throughout my life of, oh my gosh, but you're so young.

Or, you know, I your age to have gone through all that, you know, and all those different things. And so it sort of insights a lot of different reactions from people. And, the thing that I think doesn't come to the forefront very often is that those people have their wide spectrum of reactions, and I'm the container for it every single time.

their one reaction and that [:

But that's amazing that you'd never know it. And you can do all those things with a horse and you know, all of those. And it's, it's true, the sentiment of what they're trying to say, of what a beautiful thing that you're able to live the life you love and do the thing you're passionate about and, you know, help horses and help people still through what you're going through is incredible.

he things that I've spoken a [:

for just like, even if there's nothing going

on. and you know, one of the things my therapist has talked about is that someone like me is going to be more likely to be confronting for people, and that I'm going to confront them with their mortality in a way that somebody who is visibly disabled doesn't really, because they're able to separate, like, well, that person has all those things I can see going on, and I, if I look quote unquote normal or what I perceive to be as normal, then I'm fine.

I'm young, I'm healthy, whatever. But when I someone who, and the, the reality is I don't typically ever get those reactions from people who are my age. Those, those reactions typically come exclusively from people who are 20 plus years, my senior. and.

Boots Knighton: Mm-hmm.

Kathryn: One of the things that has been sort of impressed upon me is that a big piece of that reaction is you are someone who's younger than me and appears very healthy.


and so, you know, that's another really big

Boots Knighton: So can I stop you there? Yeah. I, thanks for sharing all that. And I, I have had the exact same experience and in fact, the first time I walked into my cardiologist after my cardiac event, that drew attention to my heart. He was like, he was like, Ms. Knighton, what is a young, you know, healthy adult like you doing in my office?

You know? And I remember I said, well, I'm wondering the same

o hear instead? You know, we [:

So instead of, wow, you're so young and beautiful and healthy, and you do all that you love, like what do you need instead? Because I have a feeling that there's a lot of listeners today that feel the same, or people who are caregivers, what can they say instead to their loved one that's dealing with something similar to

Kathryn: You know, it's, it's funny, one of the pieces of feedback that I get a lot is will people say that because they don't know what else to say and they're trying to show, you know, their support or they're trying to show empathy or they just don't really know how. One of the most powerful things, and this is typically the response that I get from people who are a little bit younger, tend to be closer to my age group or even younger than I am, is, gosh, I have, I don't know what to say, but I am so grateful to be here connecting with you right now.

Or, I'm [:

It doesn't hit me negatively, but it sort of bounces off me. It doesn't, it doesn't really do anything for me. It sort of feels like it's more for them and my ability to receive their, I'm so sorry you're going through that has a much bigger impact on them than it does for me, because having someone feel sorry for me doesn't really make me feel better either.

And feeling pitied doesn't, you know, the other piece of what I've gotten a lot

Boots Knighton: it's not helpful.

w, do whatever I set my mind [:

Which is sort of like, that says some things in there that don't make me feel very good, , you

Boots Knighton: Yeah. What is implied is not helpful yet. The amount of things that are implied towards us usually not

Kathryn: Oh yeah. I mean, gosh, it's, yeah. And so that's where I think, you know, there's so much power, and this is one of those things because I realize that in answer to, well, what, what would you like to hear and what, you know, feels supportive.

There is sort of, an invitation and a challenge in what my answer is of saying, you know, if someone can say, I don't know what to say, but I'm grateful that you're here, or I'm grateful to know you, or some version of that, that means that they have to be vulnerable enough to admit that they don't know how to relate and that they don't know what to say.

scariest words that we have [:

And they've shared with me sort of this level of like receiving pity and I'm so sorry you have to go through that doesn't really do anything cuz it doesn't, it doesn't lighten it, it doesn't really make me feel like, you know, for somebody to say, , I don't know what to say, but I'm here with you also says, this person has the capacity to hear and hold space for my journey, even if they can't relate to it.

And when somebody does that, like, I'm so sorry you're dealing with that, that also kind of implies to me alike and I don't really wanna talk about that anymore. or that's really intimidating to me. Or, you know, some version of that of like, this is a downer or, you know, whatever the hundred versions of sort of subtext can be in that.

t can be really challenging, [:


yeah, I

Boots Knighton: they need to have a voice too. You know? They

need to have a, a container to within, to be held, you know?

Kathryn: right.

Boots Knighton: you know, I just thinking more about everything you're sharing and different ways people, I mean, every way you've just given an example of, of how people have responded to you.

I've experienced the same and. , you know where I had, how I finally. made peace with all of that is, you know, everyone shows up with the tools that they have on any given day and they're doing, I truly believe, or I, I try to be generous and in assuming that the other person meeting me where, you know, in that day, in that moment is doing the best they can.

And you know, when [:

And I know she meant it well, you know, but like, I don't wanna be a good luck charm. But I know what she was getting at and it was really kind of sweet and endearing, . But, you know, it's just, it's information. You know, when people have pitied me, it's information letting me know. Like you said, they're not, they don't have the skills to go there.

They don't have the vulnerability, they don't have the courage. And I'm not saying that as.

Kathryn: Yeah. Yeah.

again of radical acceptance [:

Some days. It's like we also have to manage the people around us and their

Kathryn: Well, and it's exhausting

Boots Knighton: some days where I like on,

Kathryn: right.

Boots Knighton: I wanna go on


Kathryn: exhausting the amount of gracefulness sometimes that it takes to feel like I'm lapping people with the inner work required to just have, like to hold space for their knee-jerk reaction that is a manifestation of like whatever their skillset is. Like my skillset has to be so exponentially, developed to hold space for somebody who's really not giving it a second thought.

And you know, that's part of the challenge is navigating that. And one of the things that, I have found that is, you know, an ongoing struggle for me is that I, you know, got started in my career with horses extraordinarily young. And, you know, I got started professionally. very, very young and have been decades younger than my peers for as long as I've been doing it, and decades younger than my clients for pretty much the whole time I've been doing it.


And so I don't encounter these, these challenges in the same way. But, one of the things that I have found is, I will be connecting with someone who doesn't know anything about my medical history, and they'll be asking me about my education with horses, my experience, you know, my professional background.

and they'll hear about that and I'll start to notice sort of, some things coming up for them and them starting to kind of distance themselves in a way where they might have some intimidation that's coming up and have some insecurities and vulnerabilities coming up because I'm much younger than them and maybe have, you know, studied more intensively or have more sort of practical experience or professional experience.

fficult for people. and they [:

And I'll get sort of like an underhanded response. and then. in the conversations where for whatever reason my, there's any kind of medical disclosure that's come about, or even sometimes days, weeks, months later, when that information comes up in one regard or another. I will notice this shift of what is initially sort of being wary of me and being like maybe a little bit insecure just because of the unusual power dynamic of me being brought in as a specialist to deal with someone in their horse or to, you know, consult for a trainer who's struggling, you know, or things like that.

ir hackles a lot to being an [:

to do any kind of comparison or have judgment or do those things. Once they learn about my medical history, then they go, you're a miracle and you're an inspiration, and you're all these things. And I sort of go, well, five minutes ago you kind of seemed like you didn't like me very much. , you know, and now I'm an inspiration.

And, and it's sort of like it makes it okay with them that I have, that I know more about something than them or that I have, you know, a level of experience that eclipses their own on some level. that I've had to go through all these challenges and that the only reason that it's okay that I have some kind of, you know, in their perception imbalanced level of knowledge comparatively speaking, is because that's the sort of karmic relief that I get from, or reward that I get from having had to go off through all of these medical things.

and that shift is

Boots Knighton: been given credibility.

n credibility, like suddenly [:

And that's something that it's taken me several years to like really notice it. but now that I have, it's, it's like clockwork sometimes.

And it can be really challenging because neither of those responses from people feel, like I'm being truly seen, or. Connected with in a meaningful way. And so, you know, I, I don't want somebody to be comparing themselves to me, especially if it's a client, you know, who's bringing me in or if it's, you know, a fellow border or whatever it is.

You know, I, I, everyone's got valuable knowledge and everyone's got, you know, so much valuable information. And I always move through my interactions, assuming that, you know, for anything I know, every, every client I interact with, every person, you know, in the community that I interact with, certainly has knowledge that I do not, and that I would seek to have and like to learn from them.

red in that way where I have [:

So inaccurate on two really diametrically opposed levels to who I am and how I move through the world, is really challenging and it makes, you know, can make me feel really small and really, disempowered. And so that's something that I have a lot of ongoing, you know, inner work around, and that's gotten easier for me over the years because of that ongoing work.

have going on and that I did [:

Because even though I call my business open heart horsemanship because of my journey, that name started at a time when my open heart surgery was like part of my history and kind of, yes, it's always been part of my origin with horses, but it was not like who I am every day in a, on a life-threatening level.

and so for me to kind of take ownership of my story and be in control of how it relates to everything else that I do also gave me a level of empowerment to get ahead of people choosing to make me a victim when that's not who I am. And,

Boots Knighton: Yeah. So you're writing the story for them, right? Rather than having them write the story about

Kathryn: right. And that's where I think also, you know, there for a long time, you know, I felt like.

cause of my age, and that if [:

this is one more big thing for you to make an exception for and challenge your perception about. So I sort of went, people, you know, I, I made the decision for other people of you cannot handle making this many exceptions for me. If I could see how hard it was for you to make an exception for my age, surely these other things are also going to be difficult.

So I'm just not gonna share those. I'm gonna capitalize on how well I mask those things and it's, I'm sure anyone who deals with these things. And these conditions noses. Anytime somebody goes in, every now and then I'll get as a compliment. Oh, you, well, you hide it really well. Like, thanks. It's ongoing pain and turmoil.

n the process of doing that, [:

And if I do that, my kneecaps will fracture and it really hurts and I can't do that. And, you know, I'm getting told that I'm not as good of a horse rider and that I'm not as good of, you know, a, a trainer or an equestrian or whatever because I can't make my horse do these things. And the reality is, you know, my body couldn't do those things and there must be another little girl or you know, a thousand little girls or however many out there who also have these things going on and they don't know why.

she was in the hospital too [:

Cuz I didn't get to have that. And so there was a moment where I stopped and went. I think it's actually starting to feel a little selfish to hide my story and to be able to, choose to not share it in that way. started to feel like I was kind of closing off the opportunity to use my story to create space for others who deal with things like, with what I deal with.

erspective, like just simply [:

It's amazing how I, I, I heal every time. I heal more and more. And you're right, like you are telling the story for the other, you know, little girls that no matter what activity they're trying to do, you're giving them a voice to say, Hey, actually something's not

Kathryn: right


Boots Knighton: Another thing that came to mind as you were sharing about how your clients would change, like, you know, from like just maybe potentially struggling with your age, then changing, like once they knew your medical history.

I kind of experienced the same thing and not necessarily with age, but just like I noticed, like my whole world started treating me differently, you know, when I started going through my heart stuff. And I mean, it was appropriate, right? Like I went from being the strongest I'd ever been to not, and I think most people had an appropriate response.

And the word that [:

grace. And when I say, when I think of, yeah, oh, totally. That's where like I had the biggest shortcoming was meeting myself

Kathryn: Oh, me too.

Boots Knighton: and, and, and I mean, I'm writing a book about it right now and you know, it's, I just, there's such a different, like if I say the word grace and feel into that, and then I think of the word pity and feel into that,

Kathryn: totally different.

Boots Knighton: like, pity just feels like this weight on my heart.

nsive opening, you know? And [:

it just makes all the difference. And that's just what I kept thinking over and over again as you're sharing about your interaction with people. It's like, yeah, some met you with Grace that, that, that just made everything flow and then the pity that just kind of stifled the relationship.

Kathryn: and I think the other big thing is, you know, can you meet yourself with grace in the face of other people not doing that, meeting you with pity or, I, I work a lot with, you know, the word empowerment and with the concept of empowerment. And that's, that's a through line of every modality that I do.

e all interconnected, really [:

And, and the through line of personal empowerment, is something that I think is at the backbone of all of that. And, when a person has a response to, you know, my existence, that feels disempowering. You know, I think the, the true. Measure to me of where I'm at in my healing and my, you know, emotional intelligence and energetic intelligence and all those different things, is my ability to sort of step into the space of the observer and meet myself, you know, find my own empowerment in that and not, not need someone else to have an empowering or disempowering reaction for me to decide how I feel about myself.

lowed to have my reaction of [:

I can just be tired of it, and that's okay. And both of those things are separate from how I respond to that person because that. However, somebody responds to me isn't gonna change the fact that I will still meet them with grace, because it gives me an opportunity to be an educator. And the reality is nobody is motivated and nobody changes as a result of shame.

No one, no one's motivated by shame. It just doesn't work that way. No one steps out of their comfort zone because they've been shamed to do it and they've been embarrassed. And so if I have a critical response to somebody giving me a response to my existence that feels disempowering, they're never gonna change.

up on by this other person, [:

So now I'm just gonna like not make eye contact with anyone who's got a, you know, disability. I can see cuz that reaction was so bad. So I would never, shame someone. I think I would just in the way that I hold space for their response sort of gently challenge, you know, and often what I come back with is things like, thank you so much for that.

I'm actually, you know, really grateful that I've had all the experiences I've had cuz I wouldn't be able to do the work I, you know, do if I hadn't. Or you know, that if I can meet their pity for my condition by expressing my gratitude for the things that my experiences have given me, that usually tends to diffuse the pity pretty quickly.


Boots Knighton: Oh, that's so skillful and so great.

Kathryn: thank you.

Boots Knighton: that's, I mean, it is, I mean that's like mega skills, . and you know, and I think our listeners will really benefit from that. And, uh, anyone, you know, like all of us have been met with some kind of petty party at some point in our

Kathryn: And that's true for any man, I

Boots Knighton: don't have to join the party.

Kathryn: right. Well, and gosh, I mean, even if

somebody's going through a [:

So I'm going to meet that with the opportunity to hold space and, and grant him the grace that he didn't grant me. Because, you know, I think where we start to struggle sometimes as human beings is to go, you know, if somebody. in an inappropriate response to me, then I'm gonna respond back and match their energy.

that expression of, holding [:

And I think it's very similar in that way, where, you know, matching someone's energy is like, well, if their energy's crappy, I don't wanna match their energy. I wanna stay in my, comfortable, empowered place. And I wanna be able to look at, you know, what their reaction is and hold it in a bubble outside of myself and go, Hmm, most of this has nothing to do with me.

Even if some of it does have something to do with me, even in situations where I need to be accountable for something or, you know, I've gotta, I've gotta step back and go, gosh, well how did I contribute to this? And maybe there is something I should change knowing that that does not separate, The fact that they've got their own stuff and however they're choosing to put forth to me, that interaction is directly informed by their own stuff.

rgy, cuz I think it's really [:

Boots Knighton: Yes. I love that. Yeah. I, um, I was listening to something earlier today where instead of saying, I can't say I don't, and it was more in response to. you know, busyness, overwhelm, but you know, same concept. And like, I don't match other people's energy. I stay, this is what I'm hearing you say, like, I stay in my own energy and that's just having healthy boundaries and, you know, that's, that's so key to staying well mentally, emotionally, as you are fighting the good fight for your body and, you know, speaking of your body, like what's next for you.

So you had the m r I, you know, you've had all this new information, you know, as we start to wind down for today, like tell me more about like what your future holds. What's, what's life like for you at this

know, the next step, I just [:

I can't ride or anything right now. and so I've,

Boots Knighton: And why did you have the pacemaker put

Kathryn: So the pacemaker was because, during the night, one of the things that was discovered along the way was that during the night, my heart would stop beating for periods of three seconds or more, every single And it

is, and it would happen several times throughout

Boots Knighton: Yeah.

Kathryn: and

Boots Knighton: Okay.

Kathryn: so the problem with POTS is that that has to do with spikes in your heart rate. So my heart rate still spikes, but what the pacemaker has done is it gives, the way that my medical providers have put it, gives a floor so my heart rate can't drop below a certain amount, because the pacemaker will just start beating for my heart.

I've only had it in my body [:

My heart rate starts to drop because I'm having a fainting spell. Where what'll happen is my heart rate spikes and then drops, and that's part of what causes those fainting spells. And so when it drops, it just is sensitive enough that the reaction time kicks in. So they calibrate the number of, seconds or milliseconds or whatever that passes after my heart rate drops, that the pacemaker kicks back in.

And so it, it looks at how far my heart, heart rate is allowed to drop before it kicks in, and then how long it can stay there. and we're actually gonna make it a little bit more sensitive. but right now it's made it so that I don't ever like hit the floor. I will start, I'll do everything up to blacking out, so I'll still get dizzy.

peful about the ways that we [:

sort of now I, I have only the, the discomfort and not the safety risks, which is a tremendous benefit and I'm very, very grateful for that. And I would love to see how we can kind of combat the discomfort parts. Now because I have that floor put in place by the pacemaker, I'm able to, once I'm fully recovered from this, start taking a medication that will control the spikes in my heart rate.

but I couldn't start to take that until getting the pacemaker put in because it works on the electrical center of your heart and they didn't want to risk, basically it causing my heart to stop beating when I had those drops in heart rate. and so that'll allow me sort of by way of the, the medication route to give a ceiling to that spiking and that will hopefully control the POT'S symptoms, because that's what sort of affects me the most on a daily basis.

at's causing my, heart to be [:

Of course there's all kinds of other options out there, but I would love to get more information about that particular option. And, you know, it's, yeah, that's where there's a lot of unknowns and this is all sort of a new, a new chapter of this journey and gonna be sort of things that I live with. I'll have to have the pacemaker replaced in 12 years, so I have that to look forward to.

but yeah, it's just one, one thing at a time and sort of being a.

Boots Knighton: Yeah.

lking about and the kinds of [:

So there's, as far as I'm aware, not really a greater term for it. And, so navigating, having always sort of been, despite my knowledge of it, or lack of knowledge, a member of that community, but now sort of being aware of it and going, okay, how am I gonna choose to integrate the existing platform that I've built as, you know, as an equestrian professional into sort of my newly consciously claimed place in this community, and how can I use

Boots Knighton: You've shifted your


Kathryn: Right. And in a way that sort of was like, it, it was always this and I just kind of didn't know it, because I just didn't have the medical information. And now suddenly it's like I'm new to this community except I'm not really, I just, I'm new to knowing that I'm here . So

Boots Knighton: You got to know yourself on a whole new level thanks to the mri.

r what my life can look like [:

And not everybody who wants to do it is really able to show up in those ways. And so, that's where I've had to make a lot of decisions around Who I have in my life, and how I choose to build my life around those people or not. because not everybody is able to go on this journey with us, and we might really, really love someone or want us there.

And, you know, sometimes the most loving thing we can do is go, we're, you know, we're not able to be on this journey together. And I will say that I think the only thing in my experience worse than being alone in a hospital room is being stuck in a hospital room with someone that, you know, is resentful of having to be there.

so that's been huge for me.

Boots Knighton: Yes. Yeah. or resentful to help in any way. You

Kathryn: or just of your

g, who's help, who's helping [:

Kathryn: Yeah. And it can be really painful when.

Boots Knighton: I've got an amazing mm-hmm.

Kathryn: you. It's been, it's been really painful, you know, to have certain people be in my life, you know, for a long, long, long, long time. Only to discover that, you know, when this new element ca comes up, you know, it, it restructures how someone sees you.

and to sort of feel like in someone's perception of you, all the things that are the ways they did see you authentically are suddenly, completely eclipsed by this new perception of what your medical experience is and how it affects them, even if it's in ways that it doesn't really affect them and that they're not really responsible for.

nother layer to it for sure. [:

And so I've been in kind of a really synergistic period of restructuring, you know, where I'm living and, you know, sort of what's happening with all of that alongside going through, you know, this last surgical journey. so the road ahead is wide open,

forward anyway. and the, the [:

Yeah. what, what a joy to talk to you today, Catherine. I, I cannot emphasize that enough, and you know, listeners, in the show notes, I'll, I'll have all the ways you can get in touch with Catherine. And, uh, she's doing, she's doing some incredible work with, with horses. She has so many gifts that she's already offering the world.

And, I just encourage you to reach out to her for support for, you know, go to California, work with her. I think I'm gonna look into that myself. Catherine, anything else you want to tell the audience today? Any other nuggets of wisdom?

a cardiac patient who's gone [:

but other than that, I haven't really had anybody in my life who's gone through, the kind of cardiac things that I've gone through and the level of, of medical difficulty, that I have. and so to, to be given an opportunity to connect with another person and by extension a greater, you know, networking community of, of people who are in the same boat and to not have to.

sort of distill down the really deeper difficulties and the raw truths about what we experience into something that is digestible for someone who can't relate to it is, a tremendous relief. And so the, hour and 15 minutes or so that we've had to, you know, connect around all of this has been tremendously valuable and freeing to me to be able to not have to think about, okay, is what I'm about to say to something that this person can stomach or not.

t something that's gonna be, [:

And, yeah, just to sort of be in my. Authenticity and in my experience and share that and hopefully, something that I've shared is something that someone will be able to relate to and I would be thrilled to

connect with anyone in your community.

I would

Boots Knighton: Well, thank you. And yeah, there is, there's the power in being seen and heard, so I'm glad that I could provide that for you today and for the listener.

Kathryn: Wonderful. Well, thank you so much, boots. I'm really appreciative.

ere, feel free to leave me a [:

I want to hear from you. Lastly, don't forget to leave a review and make sure you subscribe so you never miss another Tuesday edition of the heart Chamber. Thanks again. Have a great week, and I'll be back next week with more stories of open heart surgery and recovery.


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About the Podcast

The Heart Chamber
Conversations on open-heart surgery from the patients' perspective
**The name of this podcast is changing on June 4, 2024. Be sure to subscribe so you don't miss the announcement!** Join Boots Knighton every Tuesday for conversations on open-heart surgery from the patient perspective. Boots explores the physical, emotional, mental, and spiritual experiences of surgery with fellow heart patients and health care providers. This podcast aims to help patients feel less overwhelmed so you can get on with living your best life after surgery. You not only deserve to survive open-heart surgery, you deserve to THRIVE!
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