33. Conquering the Wall: A Round Table Discussion

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Jennifer Milner - 00:00
Hello and welcome to Bendy Bodies with the Hypermobility MD, where we
explore the intersection of health and hypermobility for dancers and other
artistic athletes. I'm Jennifer Milner, here with co host Dr. Linda Bluestein.

Dr. Linda Bluestein - 00:13
Hello, everyone. And before we introduce today's special guests, we would
like to remind you about how you can help us help you. First, subscribe to
the Bendy Bodies podcast and leave us a review. This is helpful for raising
awareness about hypermobility and associated disorders. Second, share
the Bendy Bodies podcast with your friends, family, and providers. We
really appreciate you helping us grow our audience in order to make a
meaningful difference. This podcast is for you.

Jennifer Milner - 00:40
This episode, we're doing things a little bit differently. We usually have one
guest on to help us dive deep into a topic, but today we've got several
guests to unpack this specific topic. We're talking about living with Ehlers
Damlow syndrome, hypermobility spectrum disorder, or other
hypermobility disorders. And we have several people experiencing life with
a hypermobility disorder while trying to live and work as some sort of
artistic athlete or who have performed in this capacity in the past. We will
have everybody introduce themselves. Mariana, let's start with you. Can
you share your story with us, please?

Mariana Plick - 01:26
Sure. I'm a circus performer. I'm an aerialist specializing in dance trapeze.
I do fire breathing, fire fans, fire eating, and I also have done a lot of
contortion, although right now I'm on a break because of some tendonitis.
And I have done a lot of my training and working in New York City in
general, and now I'm in Montreal.

Jennifer Milner - 01:55
Excellent. Thank you. Kyle, why don't you tell us your name and tell us
about yourself?

Kyle Thompson - 02:00
Okay, my name is Kyle, I'm 20 years old and I live with four different
chronic illnesses. So I have pots, eds, mass, cell and Arachnoiditis. And this
all started about two years ago when I was diagnosed with a spinal tumor
and I had a couple of surgeries and a lot of procedures to try to fix my
body, and I've been recovering ever since.

Jennifer Milner - 02:22
Wow, okay, so you are going to have a lot of firsthand experiences to share
with us.

Kyle Thompson - 02:28
Yeah, I will.

Jennifer Milner - 02:29
That is excellent. All right, Marimba, let's hear from you and your little
one too, if he.

Marimba Gold-Watts - 02:35
Feels like talking, he's also probably hypermobile, as you can see. So, my
name is Marimba Goldwatch and I'm a former dancer. I initially studied
classical ballet at San Francisco Ballet and then I moved to New York and
became a modern dancer professionally. And then when I was in my mid
twenty s, I had a pretty serious ankle injury and had to retire. And in that
process of recovering from my ankle injury, I discovered that I have Eds
and I had quite a lot of, I would say, drama and trauma in my recovery
process, including four ankle surgeries to sort of recover from that. And so
that led me to becoming a Pilates teacher where I work primarily with
professional dancers, most of whom are dealing with some sort of
hypermobility spectrum issues. And that's where I am.

Jennifer Milner - 03:30
Excellent. And that's a great example know, taking what you got and
trying to deal with it and being able to make something out of it. Last but
not least, Kaylee. What do you want people to know about you?

Cailey Brandon - 03:43
Hello, I'm Kaylee. I studied as a pre professional dancer until I was about
well, until I hit my Eds wall at about 16. But I feel like the saga kind of
began when I had my first ankle fracture at seven years old. And then I felt
like it just kind of was back to back from there. It was kind of a perpetual
joke about like, oh, what time this year is Kaylee going to get a broken
ankle? And after five broken ankles one end and then four on the other, I
pretty much just hit. I didn't have enough time to recover between them.
And so the doctor basically told me I needed to have surgeries and
different things like that or if I didn't want to continue with point dancing.
And so I ultimately wanted to pursue a dance or a career in dance.
However, my body did not allow that for me.

Cailey Brandon - 04:33
However, after that kind of was on the back burner, I figured I needed to
do some kind of strength training, but some kind of strength training that
respected my physical boundaries with safety and precautions and being
able to strengthen and lengthen at the same time. So I got into Pilates like
Marimba, and I'm now currently teaching Pilates, hoping to work with
some hypermobile dancers, but also just allowing for other populations,
like non hypermobile populations as well, to kind of feed into their mind
body process in that nature. So functional intentional movement through
that.

Jennifer Milner - 05:12
Excellent.

Dr. Linda Bluestein - 05:13
Fabulous. And everyone of course, has a unique story, but we know that
there are some common threads that run through most hypermobile
stories. So, for example, who here has had that point in their career where
they were so flexible that it was easy for them and people envied their
flexibility or their ability to do different things? Anybody resonate with
that?

Mariana Plick - 05:39
I have a complicated thought as the result of that comment.

Jennifer Milner - 05:44
Excellent.

Mariana Plick - 05:46
I think people thought it was really easy and they didn't know that gaining
flexibility wasn't necessarily as difficult for me. But the other things that
came along with it where at the time I didn't even realize they were
correlated, were causing issues that just got increasingly problematic. And
I definitely think that I got a lot of jobs from being hypermobile and
people envied it a lot and still do, probably.

Jennifer Milner - 06:22
Sure.

Marimba Gold-Watts - 06:23
I would say there was definitely a period of time for me too, where having
that kind of extreme flexibility was definitely an asset. Not so much in my
ballet studies because I went to a ballet school where everybody was
hypermobile. I wasn't the only one, but more when I came to New York
and I studied at Alvin Ailey, and at Ailey, extreme flexibility is definitely
considered an. So, you know, if you could touch your head to your butt or
make your, you know, six 708:00, it was really a wonderful thing there.
And so suddenly something that I had felt was sort of a party trick was
now this asset. And I didn't really realize it was a liability until much later
when I started getting more injuries.

Jennifer Milner - 07:13
There is a sense, isn't there, that what you think of as a party trick. Once
the choreographer sees that, they're like, oh, you're going to be that girl.
And so it's easy to always give you that piece of choreography or to say,
oh, that's your special thing that you can do on Silks. Let's make sure we
do it in every single thing. Or, oh, we're always going to end a group
number with you in the middle doing a scorpion or whatever it might end
up with, right? So there is that sense, and I think people sometimes see
that and think, that's not fair because that comes easy to her and she gets
to stand in the middle and do the cool looking stuff, and I work so hard,
and nobody's ever like, oh, great, porta know, or the things that other
people work on. So there is that sense, I think, of people seeing that and
going, wow, that's amazing, and being kind of envious of it and not
realizing, like you said, Mariana, the things that go along with it that are
not either not helpful right.

Jennifer Milner - 08:10
They can actually start to cause damage, or that it's not as easy as you
think. Like the easy things you may not even be doing correctly.

Dr. Linda Bluestein - 08:19
Well, as a follow up to that, is there anyone here who has had that
moment when things stopped being easy and suddenly things became
really hard? Does anyone have a story like that to share?

Kyle Thompson - 08:33
I can talk about something great. Okay, so when I was younger, I used to
play a lot of sports. I played a lot of baseball and basketball. And a lot of
the benefits were being able to run fast and stretch out your arms and be
able to do splits while you're catching the baseball and things like that.
And it was really beneficial for me. But there was a time where I was just
dealing with constant injuries. I had broken my growth plates in my ankles
probably dozens of times. I was in boots and casts for years, from
probably age 13 to 16, I think. I was in constant boots. And at that point, I
realized that my health was kind of, like, deteriorating. And it went from
like, oh, look at him. He can do a split while he's catching a baseball to
he's wearing a boot while he's catching because he's having so much pain
and things like that.

Kyle Thompson - 09:23
And that was kind of like the turning point when I realized that my life
would probably never be the same was around the time when puberty hit
and growth plates were changing and I was suffering from a lot of pain
and it was just not something that became as easy anymore at that age.

Jennifer Milner - 09:40
Did others have a similar experience with the time that puberty hit and
feeling that hormonal shift and feeling a change in your body where things
just instinctively got harder or maybe even got easier for you?

Cailey Brandon - 09:52
I feel like I had that in a sense, but I feel like puberty was so early onset
for me. I was always like the fuller one in all of my classes, even though I
was kind of one of the youngest. But I did feel like he said in boots and
different things like that. And those also had the repercussions. Like if
you're wearing a boot that's two inches taller than your standing foot,
then if you have hypermobile hips, then they skew out of place two inches,
and then there's always like this continuous and that's kind of how it felt,
but also kind of what Marimbo was saying when people see you
stretching. And I always loved Mondays because I came back from the
weekend and I was like, my muscles were super loose and I could just
stretch and I could fold my foot over and then everybody's like, how do
you come back here on Mondays and do all of this?

Cailey Brandon - 10:39
And that was kind of like my Eds day, I guess, but I didn't realize it in the
moment. I was like, I don't know why I'm so warm after letting my
muscles relax. And obviously now I understand more about that. But just
the depletion of health in general and just seeing the back to back
happenings of why am I the only one getting injured? Right? I take ample
time and it just didn't make sense. And when you ask if people were
jealous of my hypermobility, I'm like, Oof, no, because I was jealous of the
non hypermobile dancers that could actually function for more than two
weeks at a so. But yeah, I definitely understand that.

Jennifer Milner - 11:23
I have noticed. Oh. Go ahead, Mariana.

Mariana Plick - 11:25
Sorry, I was just going to comment that I didn't do circus before the age of
13, and I also only did a couple of years of dance as a kid before my
parents decided I was far too stubborn and difficult to partake in ballet
class, which I really regretted. And when I started doing circus more
seriously as a teen, I wish that I had the ballet and gymnastics background
that professional circus performers either really rely on or try to catch up
with. But now that I've learned that I have Eds or hypermobility disorder, I
am really grateful because I think that there isn't enough information with
dance and gymnastics and circus training for people who have these
disorders. And probably it was to my benefit that I didn't start doing that
kind of training. I mean, it could be different if there was a lot of
information available for people who have Ellers Danlow syndrome who
are young in training.

Mariana Plick - 12:28
But maybe I would have had a harder time starting with circus if I had a
history as a child with.

Jennifer Milner - 12:35
Dance and gymnastics training. That's a good point. So, Marimba, you
went from ballet to contemporary and modern dance, and you are now
training dancers yourself, either as a teacher at Alvin Ailey or as a Pilates
trainer that works with dancers. How has your hypermobility and what
you went through with all of that made you a better teacher? How has it
fed into what you have to offer now?

Marimba Gold-Watts - 13:00
Well, I think that one of the ways that it's probably made me resonate
more with dancers who are going through all sorts of injuries is that I've
had a lot of injuries. And so often I can relate to them not just from
personal experience, but because I've had to deal with my own saga of
recovering from that injury. And so I have a little bit more empathy for
people who are dealing with all sorts of injuries. On the other hand,
having that dance background also because I have sort of a dual
background. One is that I still teach dance, I still teach modern dance. And
then the other one is that I work much more in the rehab setting, but
because I still teach dance, I have much more of a sense of what people
are actually being asked to do with their bodies on a regular basis.

Marimba Gold-Watts - 13:49
And so I don't just have the like, oh, I'm hypermobile and I can help you
learn how to organize your body, but I also have that. And I know what
your choreographer is going to ask you because I'm seeing them in the
studio next to me, tell you that they want you touch your head to your butt
or whatever it is. And so then I can sort of take that information and bring
all of it back to the Pilates studio and help my clients in that way.

Dr. Linda Bluestein - 14:14
That's an interesting point too, because when dancers or other artistic
athletes are asked to do these things, and especially if people are starting
to have some pain, I guess, when you're working with the client, how do
you guide them or advise them about it's? Hard to say no, because then
you know that you probably won't get asked to be in that peace or have
that opportunity again. But at the same time, knowing what you know
about bodies and that we need to be mindful of what we do, how do you
approach that?

Marimba Gold-Watts - 14:51
I mostly work with people to find a different way to a different means to
an end. So if they want to do something really extreme with their body. I
don't prevent them from doing it. That's absolutely up to them. But I try to
help them find a way that they can achieve the same goal or aesthetic in a
way that's much safer for them and much healthier for them. And if
there's absolutely no way to do that, then we just cross train like crazy so
that they have as much support around their body as possible. They may
still have to do something that's really extreme. I work with some circus
performers also, and sometimes that's the nature of what they're doing for
a living. And so we don't really have that much of a choice. But we can
cross train and we can work on proprioception, and we can work on all
sorts of different ways of strength training to make sure that they have as
much balance around their joints as possible.

Marimba Gold-Watts - 15:48
And then, especially when I'm working with somebody who's more on the
extreme end of the hypermobility spectrum, I also try and refer them to
other support systems, like people who can help with nutrition advice and
functional medicine specialists so that they're having a much more holistic
approach to their health. And it's not just like, oh, don't do that. It's so
that they have support surrounding their entire health journey.

Jennifer Milner - 16:16
Well, and just to piggyback on that, you talk about trying to find a
different way to do something right. And I was wondering, Mariana, when
you do your work, because you do a fair amount of freelance work, do you
feel like you have the freedom? When somebody asks you to do a piece for
a corporate event or whatever you're doing, do you feel like you have the
freedom to say, I'm not going to include that trick, but let me show you a
different trick instead, or to sort of make it your own? Do you feel like you
can do that?

Mariana Plick - 16:43
Yeah, definitely. I think part of why I've done so much work for myself is
because I have so much more control over my schedule and my body. And
if I'm having a week where my back is spasming and I can't do a lot of the
things I'm doing, I don't have to accept jobs for that week. It's been easier
for me than times that I've worked on contracts, although I like those too.

Dr. Linda Bluestein - 17:12
Well, that makes sense. And another thing that we're excited to talk to you
about, Kyle, is about cheerleading. So we know that cheer is definitely
another one of those areas that prizes artistry but requires athleticism. So
can you share with us how your hypermobility made cheer better for you
or made you better for cheer, and also how it was something that you had
to compensate for?

Kyle Thompson - 17:41
Sure. So I'll talk a little bit about the cheer world. There's not a lot of boys
that join cheerleading due to the superstition of guys being feminine or
whatever it might be. And I always thought it was an interesting sport,
being able to do a bunch of flips and lift up girls and do all that stuff. And
I joined a gym, and the moment I got in there, I was, like, surrounded by
everyone. They were always so interested when a new guy would join
because it's so rare to see them. And I joined a bunch of tumbling classes
because once I get into a sport, I just dive right in. I want to be the best I
can be. And a lot of the other athletes in the gym had ten plus years of
gymnastic experience, and so they had learned to stretch their muscles and
allow them to do things that they shouldn't be able to do.

Kyle Thompson - 18:28
And when I showed up, I was just kind of able to do them. And a lot of my
coaches were like, oh, it's just because you're a boy, you're fearless, you'll
do anything. And I think that narrative is kind of dangerous because it
wasn't just because of that. I had serious issues. The reason I was able to
do that is because I was so hypermobile. And it was an extremely huge
benefit, though, is because I was learning skills that took other people in
the gym years to develop. And I was doing things like, backflips within my
first week, and it's just a crazy experience. It was just such a fun thing to
be able to do things like that.

Dr. Linda Bluestein - 19:10
Interesting. And what about the athleticism part of it and developing the
muscle strength to stabilize your joints and things? Is that something that
you found challenging or were you able to manage and compensate for
that?

Kyle Thompson - 19:26
Okay, so the first year I joined Cheer, I actually had one of the worst
injuries of my life. I had torn, I think, three to four ligaments in my ankle. I
had torn a tendon, I had destroyed my ankle bone and my joint as well. So
the problem there was, yes, I was doing really difficult skills, and I was
being as safe as I could. I genuinely listened to my coaches and I did
everything right. I did the drills, I did the stretching, and there was just
nothing else that I could do. And another awful thing is that because I was
so used to being in pain all my life from my genetic conditions, I actually
landed wrong on my ankle when I was doing one of my tumbling skills and
I heard a pop and I was like, oh, that's just my joint being weird because
I'm so used to it.

Kyle Thompson - 20:18
And I actually continued tumbling on it for hours that day. And the reason
why I destroyed my ankle so bad is because I didn't realize what I had
done to it. Because I'm so used to my ankles being able to pop out of
place, being able to bend them in weird ways, and I just assume I had done
something like that, but there was just nothing else I could have done. I
did everything I could. I trained weeks and weeks to do these skills, and
there was nothing else I could have done. It just happened.

Dr. Linda Bluestein - 20:44
And that's actually a super interesting point because I think sometimes
people don't realize when they have an acute event like that, they don't
realize how bad it is because it takes on average, about 72 hours for the
swelling to peak. So it's going to feel worse the next day and then the day
after that. And at the time you've got the adrenaline rush, you've got the
effect of the exercise on the neurotransmitters kind of dampening the pain
signals. So you're like, oh, I'm okay, and you're a driven person, right? So
I'm like, I'm going to keep pushing myself.

Cailey Brandon - 21:17
Wow.

Jennifer Milner - 21:19
And I think in general, a lot of hypermobile artistic athletes are very
driven. They push themselves very hard. And we're also, like you said, Kyle,
we're used to living with a sort of low level amount of pain. So we're used
to sort of dealing with that because the flip side of it, like Kaylee has said,
is that the other side is people are like, oh, my gosh, you're always injured.
Because if you really talk about your stuff and you're like, I think I should
be in a boot again, or I can't see the room is dark. Should I finish snow, or
should I stop? Just those things that happen. Either you're the one that's
always like, there's a problem, or you just stop talking about it, and so
people don't realize it, and so you just keep going until, like you said, Kyle,
you literally cannot keep going anymore.

Jennifer Milner - 22:09
And people are just used to you plowing ahead, and they're like, well, why
didn't you say something? They're like, I did 47 times.

Cailey Brandon - 22:15
Yeah, I actually have a very similar story to Kyle's. Yeah, because the same
thing. I just stepped onto a trampoline. I barely just rolled my ankle, and I
heard an audible pop, and I was like, that kind of hurt. Just kind of like a
little, oh, my ankles are weird. I pop them out all the time. And then about
12 hours later, I'd been running and I'd been cross training, and I had just
been to dance, and I was on point. And I came back home and I looked
down at my ankles, and one was just dark and the size of a baseball. And I
was like, okay, perhaps this is and so I just had no, because I was like,
well, ankles always hurt on point, so that's normal. So I didn't ever really
give any mind to it. And I think a lot of times that is our issue.

Cailey Brandon - 23:00
We don't really give a lot of mind to what is just the continuous pain and
then what is the threshold above that.

Jennifer Milner - 23:07
I agree. Mariana, as you have pursued a career as an aerialist. I know that
you said you have had several serious injuries. So how has been trying to
deal with those because you're still pursuing a career. How has that
shaped how you train as an artist, the choices that you've made, the
opportunities that you get to pursue all of that?

Mariana Plick - 23:33
Well, it's been interesting. I've had a lot of injuries. I've injured, I fractured
my feet four times. Bilateral tendonitis in my hips and shoulders this year,
bilateral shoulder surgery last year, sprained my back, strained my back.
I've had so many. I've bruised my ribs, which I bruised my ribs because I
put a barbell weight on my stomach and was holding it doing sit ups. I
didn't think that would really bruise my ribs for like five months. But yeah,
it's interesting because I feel like I really have to fight to make space for
my body to exist in normal life and also in this weird, abnormal life that
I've carved out for myself that seems to match who I am. And I've had to
argue with coaches about what I can and can't do. And there was a time I
lost that argument and was pushed too hard and ended up in the hospital
for two surgeries and missed my first big trapeze solo contract.

Mariana Plick - 24:47
And then COVID happened. So missed out on my last trapeze
performances of the recent history of my life until I get my next, I guess.
But it's taken me a long time to find that I need a coach who understands
me and is really careful with me and looks to be more careful than I am
with myself. Because like you guys said, there's not a lot of sensory
attentiveness to tearing ligaments and muscles while we're doing our
work. It's really easy to have the adrenaline rush and the endorphins of
doing what you love and exercising and miss it. And I just took six weeks
off of training and returned today because I thought that I retour or
something and I didn't, thank God.

Mariana Plick - 25:45
I feel like I'm always all day I'm looking out to make sure I don't get
injured. Like I spend 3 hours a day doing physical therapy, five days a I'm I
just wish that I knew all this sooner when I was younger, that's all. When I
first started.

Jennifer Milner - 26:06
Well, Marimba and I do very similar work. She and I are friends and
Kaylee is getting into this as well. And I know that part of what we see
from the other side of the table is working with artists like you who prefer
not to think about your boundaries. Like, you want to be able to just get
out there and just go and be strong. And that's part of your team. Like
your trainer's job is to help you find your strength and find those
boundaries instinctively so you don't have to think about it. And it is
harder for people with hypermobility to feel where those boundaries are.
So it's constantly that educating. Are my arms straight? No. Are they too
bent? No. Are they too straight? It's constantly trying to find over and
over again. And that's part of our job is to help you guys find that spot
because it is so hard for people with hypermobility to feel that.

Jennifer Milner - 26:59
It's so hard to sense where your ends are in space when your end is so
different than everybody else's. Right?

Mariana Plick - 27:06
Yeah. One more thing that really helped me was working one one with a
coach instead of group classes, even the advanced ones. And I had to move
countries in order to afford that but it was completely 100% worth it.

Jennifer Milner - 27:26
Well, you are saying that the right coach and the right input makes all the
difference.

Mariana Plick - 27:30
I think having one one coaching makes it easier for me personally to think
about where the boundaries are and communicate with the coach and
have training that's specialized for what my body can't do and would be
good at doing with the right support.
Jennifer Milner - 27:48
That makes sense. Well Kaylee, I know that you are pursuing, like you
said, having a career as a Pilates teacher, going through all of this and
going through it at a young age. Right. You said you were 16. How did
that experience shape what you wanted to do next and what you wanted
to do with that information and where you are with your body?

Cailey Brandon - 28:12
So I guess when I quit dance or I guess dance quit me essentially I was
kind of at a loss and like y'all have mentioned on the podcast multiple
times that there's like a specific identity, especially like when you introduce
your daughter and hi, this is Kaylee, my know that's who you are. That's
like your whole title. And so when I was dissociated from that and I was
starting college, I'd graduated early at the time from high school and so I
was starting college and I just kind of came to this identity crisis and if it
wasn't dance, I didn't want to move. And I figured, well, if my body
doesn't like movement, why move it? And so I kind of became a shell
essentially even all of the studies that go to show that movement heals the
mind and the body. I kind of just was a little bitter about it all just because
if I was going to continue to get injured, why move it?

Cailey Brandon - 29:09
And so kind of went into a depressional state there for a long while. But I
understood that along with that came the weight gain and more injuries
because I wasn't supporting my body and giving it the boundaries or
support that it needed. And so I had already been in Pilates, physical
therapy for my ankle and rehabilitation for my perineal tendonitis which
ultimately put me off of point because I'm missing a groove in my ankle
that my tendon flattens out like a ribbon. Instead of goes into the groove.
And so that was what I had needed surgery for if I were to want to ever
pursue Point ever again. And so I kind of ditched that answer and I was
like, is dance really worth my life or worth that time and effort if this is
only going to get me to the next checkpoint of my next injury?

Cailey Brandon - 30:02
So how can I pursue something long term that's going to not only support
my physical and mental health, but likewise pursue what I want to do in
psychology and body cognition? And that's kind of where my mojo kind of
clashed together is when I was doing Pilates physical therapy and saw that
not only benefited and gave the support of the muscles closest to the bone
and kind of respected the boundaries, like the whole lying down process. I
mean, I had been doing Pilates as a cross training for years, and I just
figured I was like, oh, this is just to strengthen other parts of my body that
ballet doesn't. I never really saw the true benefits of the lengthening and
strengthening until I delved deeper into that. And so I really found through
it kind of like my body had found its voice and something that would
respect the boundaries of it, would support it in the correct ways and not
push it to its limits.

Cailey Brandon - 30:59
Like the ungodly breaking out at the wrist for first position and things like
that. And the things that I had forced myself to do, thinking that was
beautiful. So really finding that mind body connection and being able to
be aware of myself within who I am rather than trying to fix what I see in
the mirror, I think that was a big impact on me. Just where am I
physically? And so I wanted to share that with other dancers because I
almost felt betrayed at that point by myself, by my own body. When I had
discovered all of these things, it of course, had answered a lot of questions
that had been lingering in the back of my mind. But of course, it's still
kind of like what Mariana said. It's like, if I only knew sooner the things
that I would have done differently.

Cailey Brandon - 31:48
However, because that's in the past, how can you rehabilitate? How can
you stabilize? And how can you pass along the knowledge that you wish
you once knew to younger dancers growing up kind of like you and
Marimba do right.

Jennifer Milner - 32:03
Know? Because Dr. Bluestein and I have both been through a variation of
this journey as well. Isn't there something to let's make this suffering mean
at least the things that we have been through and the life lessons that we
have learned, let us pass those on to other people and let them help other
people. So I can definitely understand that desire to pass that on and to
make use of what you have been through in your journeys. Thanks.

Dr. Linda Bluestein - 32:30
Absolutely. And we've talked a lot about musculoskeletal issues that people
have had to deal with throughout their life. What about other issues? Lots
of people experience other comorbidities with hypermobility disorders
such as Pots postural orthostatic Tachycardia syndrome, gastrointestinal
problems and lots more. So does anybody have some of those other issues
that is willing to share about it?

Cailey Brandon - 33:02
All of the above. Yes. I have fought Pots from a very young age and it was
when I was dancing and standing for long periods of time. There was
really no correlational. There was no one thing that triggered it. Maybe
my brace was too tight, hints toward the brace, or maybe it was too hot in
the room, or was your blood sugar up? And at a point it was more spaced
out and I never really understood why I was passing out. Maybe I was
locking my knees. But I mean, there were times where I would literally fall
to the ground and I did actually have a neurologist tell my mom or ask my
mom, is she getting enough attention at home? It was such a perpetual
event and I did feel kind of crazy at that point because I was like, yes, I do
enjoy collapsing on the middle of the floor and eating hershey's while
everybody else continues this.

Cailey Brandon - 34:04
And so but yes, having the GI issues on top of all of that comes with also
the Dysautinomia, because Pots is directly correlated to the gastroparesis
and different things like that, and just the simple comorbidity of not being
able to heal in time. I have dental issues that have been going on for seven
years and my endodontist is like you have not had any bone growth since
you were twelve or 13 seen. And it's just seeing that it's a little frustrating
not knowing that you're or knowing that you can't trust your body to take
over like that. And so that comes with a ton of different aspects of all of
those comorbidities like that.

Dr. Linda Bluestein - 34:50
And I imagine there was a period of time where before you knew the
names of some of the things that were going on that you thought that, oh,
I don't know if these are actual issues or my body is just kind of wonky.
Was there a period of time like that?

Cailey Brandon - 35:05
Oh, for sure. I used to sit in the backseat on my way to dance and I would
just sit there and I'd feel cranks in my neck and cranks in my elbow and
ache in my knee. And I used to think like my nine year old self would think
if I were in somebody else's body. Do people experience this much pain on
a regular basis? And it was just so confused. I was like the metacognition
of it all, just being able to reflect in yourself and being like where I feel all
of these different things. And I was like, am I just a wimp do people feel
this on a regular basis, but I'm just a sissy toward it? Is this just a regular
thing? And also with the perpetual injuries and dance, I'm like, maybe
people just push through. But obviously if the x rays are showing that I
have torn tendons and I also have fractures, I was convinced that there
was something wrong.

Cailey Brandon - 35:55
But again, there was an aspect of, okay, maybe I am crazy, maybe I'm just
the OD man out. Maybe I just need to get over myself. There was definitely
a factor of that, for sure.

Dr. Linda Bluestein - 36:07
My husband told me once that I had so many issues that my issues had
issues. Yeah, it was hard for him to understand, especially the extra
musculoskeletal stuff and especially before getting the diagnosis. So we're
talking about the extra musculoskeletal things that people often face.
Does anyone else have experiences with that they would like to share?

Mariana Plick - 36:34
Sure, I'll go ahead and share. Also have gastroparesis. Only met a couple
of other people who know what that is. I get lightheaded kind of a lot. But
I don't have a diagnosis for Pots as of this current moment. I do have a
vocal cord dysfunction, which I wanted to mention because Jennifer is the
first person I've ever heard say that she's met multiple people with this
condition. The other one being a pulmonologist at Yale that I talked to. So
basically my vocal cords try to shut when I inhale if I'm exposed to
pollutants or anxiety, which is really annoying. And I thought it was
asthma and tried asthma medications like corticosteroids, which can
weaken your bones and potentially cause more injuries and doesn't work
for vocal cord dysfunction. And it's estimated that maybe half or more of
all people with an asthma diagnosis have this instead.

Mariana Plick - 37:34
Also, just like generalized anxiety, I'm nocturnal. All these little things that
I never imagined were correlated with one another, aside from being a
very strange, abnormal person. All related. The GI stuff. I went on a really
strict vegan diet when I was like 13 and that really helped me. And gluten
free later. And I don't know, I eat a really, I guess, selective diet though.
And it's the only way that I can manage the stomach issues.

Jennifer Milner - 38:15
That makes sense. And as were talking about earlier with the
musculoskeletal issues, with it's all of these small things until all they
collect into this one big thing. And at the time, you still think I'm crazy.
Like everybody must hurt this way. I think it's the same way with these
comorbidities. If you have MCAs or if you have Pots or something like that
it's just these little weird things. Oh, Kaylee faints in the middle of, you
know, Mariana can't breathe if she's around paint fumes or just little
things that you think, oh, it's probably no big deal. But then you start to
pull those threads together and realize there is something bigger going on
and there's usually that moment of finding that one person to pull those
threads together. So did you start pulling the threads together yourselves
or did you just luck into finding a doctor or a medical professional that
was like, hey, let me ask you some other questions too while we're talking
about your ankle.

Jennifer Milner - 39:09
How did you get help for the other stuff?

Mariana Plick - 39:12
Well, for me, I was very frustrated with the medical community for my
entire life because they thought I was exaggerating or faking it. I got
called a hypochondriac. They tried to treat me with medications or things
that would have never worked and I knew they weren't working. And for a
while everyone thought that people who were gluten intolerant but didn't
have celiac disease were just making it up and wanted to be like trendy or
something, vocal cord dysfunction or like being sensitive to chemical
fumes. Doctors thought that was a hoax. It wasn't until I started dating
my current partner who has a couple of friends with Ehler Stanley
Syndrome, including a really close friend who continuously is hospitalized
for it. My friend as well that my partner pointed know, you have a lot of
the same ailments that has and then as the years, like a couple of years
went by and the symptoms got a bit worse, I eventually talked to Jennifer.

Mariana Plick - 40:18
She was like, you know, all of these things fall under this category.

Cailey Brandon - 40:25
I think that's a really great point to bring. Like on doctor's day, I was kind
of reflecting as I was looking through like happy doctor's day, respect all
the doctors and everything. And I thought the same thing growing up. It's
difficult to kind of come to terms with all the doctors that I guess looked
at you in the face and my nickname, my PCP and my Orthodontist. And
everywhere I was fluke for everybody. Because you see these medically
trained professionals and they look at you with their eyebrows scrunched
over and they're like, we have never heard of this before. And it's like, I'm
serious, these things are happening. But that's a really great point to bring
up and knowing actually encourage that. Hopefully more doctors will
come to understand that they're all related. And I think to answer Linda's
question, it was a lovely Jennifer Milner who kind of spoke with me about I
was standing in front of her and she was sitting on the Cadillac, the
glorious Cadillac of Pilates.

Cailey Brandon - 41:30
And she started asking me all these random questions and I was like, yes,
my skin stretches. Yes, I have weird teeth, things that happen, and yes, I
can put my leg behind my head. And then it got more and more involved of
me doing my own research and talking with cardiologists and it was just
kind of like that big light bulb moment. It was answer to majority of most
of my battles. And then of course, as I branched out and I started telling
people, doctors like, oh, I have a hypermobile disorder, they would be like,
they were more likely to understand rather than coming first on saying
that I had a hypermobile disorder rather than them trying to guess it
firsthand. So I've always found that before I knew my own diagnosis. It
was really difficult to find that, obviously, because I went doctor to doctor
to doctor, and it only took them 1618 years to actually diagnose me with
what I had already.

Cailey Brandon - 42:27
And I had seen multiple professionals on various different things. But
yeah, that's definitely I also had one of my cardiologists have an intern,
and she had me on the table. She's like, Lift up your shirt. Let me pull your
skin. And I was like, what? I was kind of her guinea pig. She's like,
Because it's so in the works, right? That's why we talk about the nude
findings of it all, is because there are a lot of more things to know about
it. And I think just finding the intrigue and hopefully the doctors that have
the same intrigue will come to understand that it's not just in our heads,
not crazy.

Jennifer Milner - 43:09
Well, that's a nice segue into talking about something else that comes
along with hypermobility a lot, which is people with hypermobility do have
a much higher statistical likelihood of having anxiety, which a couple of
you have mentioned here, having obsessive compulsive disorder,
depression, eating disorders, other mental health issues. If anybody wants
to address that at all, and their personal experiences with that, we would
love to hear sort of how you have coped with any of that.

Kyle Thompson - 43:40
I'll talk about something. So when I was first diagnosed with Pots, it was
very confusing. I didn't know how to cope with it and all that. And I first
started seeing a therapist around, I think I was 17. And it really helped. I
wasn't diagnosed with anything, but it felt nice to talk to someone about
my issues, and then it kind of spiraled downwards. When I was diagnosed
with my tumor, I was extremely depressed, had a lot of anxiety. I wasn't
sure what was going to happen to me. I had been told I could have been
paralyzed. And there was just a lot that came out at me all at once. And I
was getting to the point where I was like, I don't even know if I can just
live anymore. It's just too much. And I told my mom, and she was like,
we'll get you to see another therapist.

Kyle Thompson - 44:24
And I started seeing this one lady. And just being able to talk about what
you're going through, even just saying the words like, I just don't want to
live right now out loud, can really open your mind to figuring out why you
feel like that what you can do to help yourself, and just better ways to
manage. I had no stress relievers. I was bedbound for months due to my
illnesses. There was nothing else I could do. But the one thing that I
always had going for me was my therapist. I could always talk to her and
figure out things to ease my mind. And it's just an extremely beneficial
system to have someone to talk to.

Jennifer Milner - 45:04
That's great. Thank you for sharing that. It is hard sometimes to take that
first step to be able to talk to a stranger, but hypermobility disorders and
everything that comes along with it, as you said, can be so overwhelming
that it really does help to have someone to process it with. So thank you
for sharing that.

Mariana Plick - 45:24
I'll just add that I found it really helpful to have a therapist also. And
mostly it's been online as of the past couple of years. And I also meditate
every night, literally every night for years, 30 minutes, maybe four
minutes. I'm really tired, to be honest, but just like touch base every single
day. It helps.

Jennifer Milner - 45:54
It does. Dr. Bluestein that's one of the things that you talk about as well
when you talk about pain management. Do you want to just sort of
elaborate on that a little if you.

Dr. Linda Bluestein - 46:04
It'S so often that the autonomic nervous system so with someone that has
Dysautonomy or Pots is one of the subtypes. If you can train the dial of
your sympathetic to parasympathetic nervous system, if you can kind of
train that at certain times of the day to be biased towards the
parasympathetic or the increased vagal tone or slowing down your heart
rate, which improves your digestion, then over time it actually can make
changes in the brain. Like we know Buddhists, they actually are able to
make structural changes in their brain by doing that. That's a really great
thing that you do because that really is one of the things that has been
shown with Pots to beneficial. And it is challenging because oftentimes
when we bring this up, if somebody doesn't, they might misinterpret that
we think it's in their head and it's like, no, but what's in your head does
matter tremendously.

Dr. Linda Bluestein - 47:03
So while people with hypermobility are prone to anxiety, we know that
those are highly correlated. Very highly correlated. But if we can do these
kinds of things to help combat that, it can help improve a lot of symptoms,
including things like gastropresis.

Jennifer Milner - 47:19
That's so interesting. So you guys have shared some really great stories
tonight. Not great like, wow, that's so fun that you got to have
gastroparesis, but great things that will really resonate with a lot of our
listeners. As you have gone through this journey, have you thought about
what sort of advice would you give your younger self if you could and also
would you do things differently? And also what advice would you give
people now who are in that position, who are listening and who are
thinking, I don't know if worth trying to move forward, I don't know how
to seek help. I don't know if I have this or what would you say to these
people?

Marimba Gold-Watts - 48:01
I would say the most important thing is to start looking for a team of
people who don't necessarily have your same issues but can help you
figure out a way to just have balanced support. And your team has to be, I
would say, pretty diverse. It's not necessarily just somebody who works on
your body, but you need a mental health professional and somebody who
understands why you can't digest this, that or whatever. And maybe an eye
doctor who can work with the fact that your lenses are always changing
and a dentist who understands that your teeth are going to shift. And so
many other people on your team who understand all of the comorbidities
and all of the other issues that can come with having Eds or any sort of
hypermobility spectrum issues.

Kyle Thompson - 48:48
I would also say one thing about that is about how to help yourself now is
definitely finding specialists. One thing I always had trouble with was
growing up talking to primary care doctors and childhood physicians,
things like that. Yes, they're incredibly smart and they went to medical
school, but they don't have the grasp on your illnesses to think outside the
box and be like, oh well, it could be this rare genetic condition I learned
about getting my PhD or something. And if I had known that seeing a
specialist at such a young age about how different my life would be now
because I found Dr. Bluestein when I was 20 years old and I just couldn't
imagine if I had found someone like her when I was 13 years old and
struggling with so many different issues. If I had started on certain
medications or learned how to move my body in safe ways, I'm sure 99%
of my issues that I'm having now could have been avoided just because
some doctors can't think outside of the box or just won't even try to at this
point.

Dr. Linda Bluestein - 49:52
Thank you, Kyle. That's very kind. And I think that those are good points
that everyone needs somebody to really advocate for them really hard in
their corner, that's really going to help them find pivotal people on their
team that really are going to think through things very thoughtfully. So
thank you for sharing all that.

Kyle Thompson - 50:20
Of course.

Mariana Plick - 50:23
I've been thinking about answer to this, and I don't think it's an easy
answer, but I do have some thoughts now that there's more research and
there's The Disjointed, the book that you co authored, there's podcasts
like this. There are doctors who are aware of the boundaries and
peculiarities of these disorders and coaches too, who are either people
who have these issues themselves or are aware of it. I think for anyone,
figuring out that you have Ehler Stanley's Syndrome or a hypermobility
disorder or Pots is really important as soon as you can before you start
your training, if you can and then knowing who you are. For me, I know
I'm a sensitive person and I need a coach who's also attuned to that so
that they know when I'm injuring myself potentially. And they know I don't
need to be pushed, I push myself too much.

Mariana Plick - 51:24
I need to be cautioned a bit, but also encouraged to keep going and just to
maybe find someone in your corner, in your art or your sport, who also
will stand by you and understand that you need to take breaks, you need
to go slower, but you will get there. And you're not weak, you're just
different. Your body does unique things and that can be great for dance
and for circus.

Jennifer Milner - 51:56
That is very true. That is I would say also marimba and I both work with
pre professional dancers at a very high level. And I always encourage
parents, I tell people it's too soon to start. Your kid, like your nine year old
doesn't need to be in a super rigorous training program, cross training
and all that extra stuff. However, if you have a kid that is super bendy or is
constantly in pain or those sorts of things and your parent gut is saying, I
think they need something else, listen to that. I would much rather parents
bring me their twelve year old and say it's just little twinges aches and
pains, but I thought maybe we could start to strengthen her. I would much
rather do that than deal with a 15 year old who has developed to bigger
aches and pains and has to work so much harder to learn how to control
it.

Jennifer Milner - 52:47
So for the younger audience, if you feel it and you feel like there's
something going on like Kaylee said, she knew from the age of nine that
there was something going on with her body and that she was kyle said,
you know, it's not natural to be able to do the splits when you are pitching.
And if you notice that and you feel that it's okay to speak up and to ask
for outside help and to ask to try to find answers on it, there are so many
great people out there who can help you. You just have to find that one
and that one person will help you find another and another, and soon
you'll have a whole team together.

Dr. Linda Bluestein - 53:21
I often say it's never too early to start on those kind of things. So I'm
always careful not to over medicalize. Obviously we don't need to put
people on a bunch of medications and things like that, if not necessary.
But at the same time, by somebody knowing sooner rather than later that
there's a potential issue, they can really pay attention to their diet and
they can really be more mindful. And I love meeting young people like Kyle
because it makes such a big difference and you can really change that
person's trajectory for the rest of their life. So it is so important if we
ignore what's going on with younger people, they go through the years
and years of lack of validation and pain and suffering. That is not
necessary. Or at least a lot of it is not necessary. Does anyone else have
any advice that they would give their younger selves if they could?

Dr. Linda Bluestein - 54:21
Or advice that you want to give to people now that are hearing maybe
part of themselves and your stories?

Cailey Brandon - 54:29
I would definitely say probably the same thing to my younger self and to
others, because I feel like there's a lot of people out there that if we are
not in the dance community, or if you're not actually in any particular
community of physical awareness, it looks different. Just because you're
not regularly moving your body, you're not kind of discovering the
different facets of your bendiness. But people who do and kind of just see
themselves as little funky, a little wonky here and there have these certain
things. I would just say, one, you're not crazy. And two, it's all connected.
And I feel like there are so many different little things that can pull from
the musculoskeletal to just the bendiness and from the obsessive
compulsion, the perfectionism, the version of wanting to control
everything external of you because there's so much like you can't control
within you.

Cailey Brandon - 55:30
And I think it's just that heightened especially for me, it was that
heightened internal sense of awareness, right? And even especially with
Pots, if people have Pots in their blood pools and their legs start to swell
and then for me, there comes the multidimensional aspect of how it
transcends social anxiety and body dysmorphia of like, my calves feel
huge. Are they huge? And so all of these things that you feel and are
experiencing that they're most likely connected, and not that there's one
answer to it all. Just the research and the backings of being able to kind of
find those little tidbits. It's all like one big spider web, a big fascial web.
And so just kind of finding your niche and how you can understand
yourself better and also kind of giving tidbits for other people who
struggle with the same thing. I actually had a non dancer say that they
started rock climbing because they have Eller Stanlos or hypermobility
disorder.

Cailey Brandon - 56:31
And they started rock climbing, and I was like, that's great for it not only
challenges their upper body strength, but it's like their proprioception of
where they place their hands in front of them without having to and their
feet underneath them. And I was like, that's such a know. They're just
finding your expression of whatever it is by art or just different things and
knowing that you're not put down by it all.

Jennifer Milner - 56:54
Well, we really appreciate you guys speaking up today and sharing your
stories. I know it's not always easy, and we are really grateful for you
offering to chat and share your experiences with our listeners.

Dr. Linda Bluestein - 57:08
Yes, we are extremely grateful. Does anyone have anything that they want
to add before we wrap up?

Marimba Gold-Watts - 57:15
I would just say one of the things I think was most important for me is
figuring out how to be my own advocate in this whole saga of
understanding my own health. And I said before, having a team is really
important, but even within your team, continually learning how to
advocate for yourself, and that's something that most of us aren't taught
at a very young age. And when you're younger and you're starting to deal
with all of these issues, a lot of times you really don't know if it's in your
head or not. And so you want to advocate for yourself and you know
something is off, but you don't quite know what is off. And at least in my
experience, and I don't know if anybody else had this, but I'm sure my
mom and my grandmother also have Eds. And so when I would describe
things to them, they didn't necessarily see it as abnormal because they
experienced it also.

Marimba Gold-Watts - 58:12
So that was also tricky because I was like, oh, well, my mom has it, then it
must be normal. And I didn't really pursue it until I started having
significant issues. So if something doesn't feel right, it probably isn't. So
speak up and try and figure out how you can get to the bottom of it.

Jennifer Milner - 58:33
It's great advice.

Dr. Linda Bluestein - 58:34
I think that what you said was so important about the parents and the
grandparents. Yes, and the tricky thing is that and I don't know if this fits
with you all's experience, but it definitely fits with my experience
personally and professionally, that the older generations are less affected
than the younger generations. And those of us that take care of a lot of
people with Eds and related disorders, we believe that this is multifactorial
one, being like the quality of the soil isn't as good. So in general, people
are getting less nutrients in their diet. Our environment has become more
toxic with different chemicals and things like that. Definitely more
stressors and a lot of different things that we're exposed to. So I think it's
also challenging because even if you identify with older people, older
generations, it's easy to be like, oh, but they're okay, and they've dealt
with it, so it must not be that bad, but oftentimes it is worse in the younger
people.

Dr. Linda Bluestein - 59:33
So I just wanted to mention that. Well, thank you so much to every single
one of you. Kylie, Kaylee, Marimba and Mariana, we are so grateful to you
for sharing your experiences, and you're going to help a lot of people by
being able to identify with different parts of your stories, and we just are
so grateful. So you all have been listening to Bendy Bodies with the
Hypermobility MD, and we really appreciate everyone coming on the
program today. So thank you so much.

Jennifer Milner - 01:00:06
Thank you, everyone.

Marimba Gold-Watts - 01:00:08
Thank you so much for having me.

Cailey Brandon - 01:00:09
Thank you. Yes, absolutely. Thank you so much.

Dr. Linda Bluestein - 01:00:13
Thank you for joining us for this episode of Bendy Bodies with
Hypermobility MD, where we explore the intersection of health and
hypermobility for dancers and other artistic athletes. Please leave us a
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Dr. Linda Bluestein - 01:01:15
They do not necessarily represent the views and opinions of any
organization. The thoughts and opinions do not constitute medical advice
and should not be used in any legal capacity whatsoever. This podcast is
intended for general education only and does not constitute medical
advice. Your own individual situation may vary. Do not make any changes
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