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W four WN Radio. Hello and welcome to Fearless Fabulous You. I am
your host, Melanie Young, and it is a beautiful day in December twenty
twenty three. We are happy to be reigning in a new year, and
I am really excited about twenty twenty four, really excited. If you follow
me, you know that I am all about spotlighting amazing women with inspiring stories
who've overcome odds, changed their lives and have set their course in a new
direction. And gosh, I've done it so many times myself. I'm going
to be doing it again too. In a big announcement. So this show
is going to spotlight someone who simply has the most amazing story. Really,
here's how I'm going to set it up. She's a competitive paraserver, a
golfer, a photographer, a philanthropist, an advocate, and the author of
a book called Rough Waters, From Surviving to Thriving with Progressive Muscular Dystrophee.
At age thirty four, Heather C. Markham received a life changing diagnosis.
She had progressive muscular dystrophee that would eventually require her using a wheelchair. Her
walking days were going to end much sooner than she'd expected. Now, I
know people in this situation, and it is hard to live with the progressive
illness. But despite her body's betrayal, because her body was betraying her,
but her mind is strong, and you have to remember, just because your
body is betraying you, your mind can be amazingly strong. Heather fearlessly leaned
into adventure with a capital a performing as a belly dancer, falling in love,
becoming an avid paras server pretty Awesome, winning Missus Wheelchair Kentucky, and
pursuing her lifelong passion of photography. She shares her story with heartbreaking humor and
a lot of big reveals in Rough Orders From Surviving to thriving with Progressive Muscular
District Fee and I'm really honored to have her joining me today. I'm fearless,
fabulous. You welcome, Heather. Thank you so much for that amazing
introduction. I am honored to be here and having the opportunity to have this
really great conversation with you. Thank you well. As I read your book,
I was in Hawaii watching surfers and I was like, my god,
I can't imagine. You know, I can't even get on a surfboard.
And I have a very good friend in the restaurant business who is a huge
advocate for those who wheelchair users. He founded an organization called Wheeling Forward.
His name is Sianic Benjamin and he just won a Michelin Store for his restaurant
contento, which really takes advocacy for those with disabilities to the highest level possible
with a totally retrofitted restaurant to help everybody. And I have a huge sensitivity
for it because in New York it's not easy to get around in a wheelchairs.
In most places it's not. But before we get into that, I
want you to share your story. You can from a back ground where you
moved around a lot talk to us about your family and your childhood. Sure.
So my dad was in the military, and like a typical military brat
as we're called, right, we moved every few years. I mean in
the seventies it was three and out like you. And so that constant moving
that gave me the opportunity to learn how to reinvent myself. Right, So
you learn how to adapt to your situations. You learn quickly how to size
things up and figure out if you're going to fit in, and how to
change your self to fit the environment. Can you give some examples? Oh?
Sure? So I was held back in school because of my October birthday.
So I was seven years old in first grade, like I was really
old to be in first grade. But what my teacher did was she actually
gave me my dictation words on a tape recorder and sent me out for the
teacher's lunge and then had me reading to the other students. Well, that's
a recipe to get yourself beat up at recess, so you know, you
figure out how to down I figured out how to downplay that so that I
would fit in with my peers. That skip that being held back meant that
when we moved. I skipped a grade, so now I was really young
to be in third grade. And once again you figure out how to fit
in, and you go, okay, well, I'm an Air Force rat
living at west Point. They the US Military Academy, which is the Army
school. How do you not run your mouth that gets you beat up?
That, you know, because I was raised Air Force rules and Army sucks.
Well, you say that as a third grader living at West Point,
you're going to get your faith beaten in. So you learned how to not
say that kind of stuff. But in the meanwhile, you know, I
played the kids in the neighborhood and and we all figured out how to,
you know, make that work. But the constant moving meant that when I
would fall down and get hurt, and there wasn't a lot of consistency in
the medical treatment. Right, Mom noticed that I wasn't healing very quickly,
but that I was like getting hurt a lot. And how old were you
when you were falling down? Heather? Oh gosh. Mom called me her
clumsy child, so I was probably always falling down. I mean I had
broken bones at the age of six. I grot my mom at six,
just falling so and Mom called me her brittle boned girl because it was just
kind of strange but muscular dist to be is genetic, and but no one
else in my family had it, so there was no reason to suspect anything.
And when we finally in that year that we were at West Point,
I was at the er once a month with something. And it was really
surprising to me looking back, of course that like child Protective Services wasn't called
in, you know, because nowadays with that kind of a medical record,
you know that absolutely there would have been, you know, there would be
huge scrutiny. But we shared our medical records, and I say, there
just wasn't that necessarily necessary follow through, say, not that anyone would have
suspected anything. So were you close to your parents? Yeah, m hm.
I My mom worked really hard to make sure that she was around for
us. So she worked nights in the hotel industry, and she thought that
my dad should be more involved. And so my dad was the cookie mother
for our girl, for my girl Scout troops m and he was the person
who took me on road trips so that I could travel for tennis. I
was a I was championship ranked in the state of Texas and the girls twelve
and hunders and we were all over the state of Texas. So and they
supported what I did. They supported orchestra, and they supported my being in
school plays and you know that kind and support it. So I would say,
yes, does that make sense? Yeah? No, I just was
curious because you know, it's rocky. I mean, you're if I had
a child that was getting injured a lot, I'd be like doing a lot
to find out what the hell's going on, you know, But you're moving
around a lot. It's probably hard to have relationships, as what I'm thinking,
when you're moving around a lot. Right, Yes, it's it's very
interesting because there's not a lot to clinge it, right, I mean you
kind of just you know, your family is the stable thing in your life,
and you learn quickly how to make friends and let go and move on.
And I have a few friends from I actually have a few friends from
elementary school, but I still chat with online, which is fairly amazing.
But it's moving around that much taught me how to recognize who to keep and
who to let go of. That's interesting. I've heard that I've interviewed a
couple of people that have come from military families, and they've most said that
the you know, establishing long term relationships could be hard, but you kind
of select and choose as you go. So at what point did the reality
was that you really had something that was not right with you, and you
sought further doctors to see what was wrong. So I injured my back at
the age of twenty two when I was working custodio, and that seemed to
set off this whole cascade of things in my body. There's been some research
that supports the idea of a traumatic event triggering a genetic condition, and so
that injury was severe enough that I was out of work and I was seen
by a lot, a lot of a lot of a lot of doctors.
Unfortunately, how my symptoms presented didn't look like a typical back injury, and
so they would send me out to physical therapy and I would get better as
quickly as they thought I should, or the exercises that the physical therapists having
to do would fatigue me quickly to everyone's surprise. And so as time went
on, I actually had doctors say to me, two of them actually,
one who said, if you hate your job, this much, and because
I was working with serdial, he said, if you hate your job as
much, you should quit rather than take an injury, which was, you
know, just really strange to me. Yeah. And another doctor who after
rounds of physical therapy I wasn't really progressing very well, he said, I'm
just going to tell the company that you're faking it. Oh God, And
I just started to cry and he said, see, aren't those tears just
really it's a relief. You don't have to lie anymore. And I said,
you know there's something wrong, and just because you don't understand it doesn't
mean it's not true. And I'm gonna I'm gonna say something really snarky.
So I'm just gonna I'm going to give you a snark alert right here.
Snark alert. Okay, snark alert. He's dead of a brain tumor and
I'm still here. Wow. So the snark is I win. So that
the bottom line is you you know, first of all, the bottom line
is you have to be your own advocate when you deal with the medical profession.
If you and you have to push, and you had to push a
lot, you had to push a lot because it was yours was a tough
diagnosis to nail down. And I am not an expert on must muscular dystrophe,
but you have something called limb girdle muscular dystrophe. So I would assume,
like you know, I'm a breast cancer survivor, so there's emptying different
kinds of breast cancer. So I would safely say there's different kinds of muscular
dystrophe. So you had to nail down what you had in order to figure
out how to treat it right. Right. So when I was first diagnosed
in two thousand and two, so we are a long way down the road
by now, there were no specifics about limb girdle muscular dystrope. All they
said was we get a muscle buyout. See, we recognize that it's in
the muscular district be family, but it's nothing that we can nail down.
It's not als, it's not dushen, it's not my physiogravits, which is
a muscot district like, it's not one of those. So we're just going
to call it a limb girdle mustardst to be it's it's going to take out
your hips in your shoulders, but it's really kind of just a garbage hand
term. This is these are the words the doctor said to me. It's
a garbage hand term. So what I like, that's a that's kind of
spooky because you know, because you really want to know what's going to happen
to me. I mean, you've basically been told you have a degenerative illness
and your body is going to disintegrate, and you're like, can you give
me a time frame? Can you give me? Like? What? Like,
I'm trying to put myself in your shoes because I mean, when I
was diagnosed with breast cancer, I had a million questions like what is going
to happen? And and then there's those variables. So at what point did
you go from, for example, walking with a cane to having to get
a wheelchair to realizing your shoulders were going what is the how is the progression
happening? And where are you now in this sure So I was walking with
a cane due to back pain and losing my So part of the musk hearestry
subtype that I have means that the long muscles that go from the bottom of
your ribs down to your knees are actually the ones that help you stand up
straight. So that set of muscles is actually getting weak. So I was
getting more and more bent over. I started using a cane on and off
in oh gosh, let's see nineteen ninety, as early as nineteen ninety,
and I got my first wheelchair in two thousand and eight. Now, the
literature that I got in twenty in two thousand and two said limburtle mustard just
to be typically progressed, so that the user ends up with a wheelchair twenty
years after onset, and so I kind of did the math and thought that
I might end up with an extra couple of years in there. I thought
I might have my first wheelchair about twenty ten. But I had gone,
I had run the whole progression from Cain to Cain with ankle foot or foci
supports because I had foot drops and was dragging my toes and falling down to
getting a roll later, which is one of those walkers that with wheels in
a seat that you can buy at the costco, right right, yeah.
And then it wasn't until I so I, let me tell you, I
fought a wheelchair like I just spot it because I had only ever seen a
manual chair, and I knew that my shoulders were weak. I had no
idea how I would push a chair. I had no idea how would get
out of a chair because I was having difficulties standing up from chairs. And
no one ever said, hey, this isn't how this is going to go
for you. No one, you know, at no time between two thousand
and two and two thousand and seven did my neurologists and I ever have a
conversation about what a wheelchair would look like in my future. And so I
was just left to, you know, let my brain run them up,
which is never a really good spot when you, you know, have a
disease that no one can really pin point down for you. But so it's
twenty twenty three. I'm fifty six years old now and I use a powerchair
full time. And I've only ever had a powerchair because everyone was like,
yeah, girl, you're never going to push yourself. Really, you know,
I can. I can. I have a manual chair for travel sometimes
and I can push my way across the pile floor probably fifty yards and I'm
toast. I can done. And it has to be flat, you know,
So you ever put if you ever put me at a curb cut with
my manual chair, I'd be out into traffic without being able to stop myself.
But here's the thing. You you have a life where you are functioning
amazingly. I have to say, you know, I got so the whole
wheelchair thing and the involved process in getting a wheelchair outffitted for you was for
driving, for flying, for everything, was so I couldn't believe how what
an industry, the wheelchair industry is. I mean, I couldn't believe how
complicated it is. It is so complicated. And at this point, I
have a great, big monster of a power chair and I just kind of,
you know, make a joke about the fact that it is an entire
foot longer than where my backside sits. So I just kind of, I
just kind of joke about my wheelchair big booty when when I'm in restaurants and
stuff, because I want to make sure that people don't kick the back of
my chair. So I want to ask you. I want to ask you
about that. So sure people who do not have wheelchairs don't understand what people
who have wheelchairs need and can appear very insensitive. Yes, And I want
you to talk to us because I remember when I hit breast cancer some of
the stupidest things people say to me, So talk to us about so that
people can be more aware and sensitive. What are some of the really ridiculous
things and challenges and how can people be better? It's kind of a two,
two or three part question, but you know where I'm going with it,
yep. And let me let me back up and finish the other answer,
which is that my power wheelchair. I'm either on my power wheelchair or
I'm in bed, like that's my day. Wow, So there's no in
between for me. Do you have someone helping you, a caregiver? I
have? I have a caregiver who comes in three days a week to help
do laundry and clean the house and help me shower, but otherwise I live
alone. Wow. Yeah, good for you killing it. Thanks, So
the things that wanted so people, isn't that funny? Let me work.
Let me frame up my words really carefully here. Sure, No, it's
not. It's not that so much as I want to make sure that I'm
really accurate in what I'm trying to convey. Is that I will say that
I have a disability, but not that I am disabled. Good point.
So that's my that's me. Those are my choices. I follow follow Matthew
Sanford's language of I sit on my wheelchair and not in my wheelchair. Good
point, because you sit on a kitchen chair, not in a kitchen chair,
right, right. And it's not to say that my wheelchair is a
kitchen chair, but it's to help convey the message that I'm not wheelchair bound.
I'm not confined to my wheelchair. My wheelchair is actually the thing that
lets me roam the neighborhood, right, It's the thing that lets me go
to wherever it is that I want to go. I mean, we just
flew my backup chair and went to Europe for twelve days. My fiance took
me to Europe. Wow, and we took that monster powerchair all over you
know, in Madrid, in Barcelona and Paris. In the States, the
big challenge is just plain access. And you know, there are still restaurants
that don't have accessible bathrooms. I know, and there are still I've still
been taken through kitchens. They're like, oh, yeah, the ramp was
in the back and you have to go through the kitchens to get there to
get to the dining room. Well, that isn't isn't awesome? It doesn't
make me feel welcomed. It doesn't feel like you actually value my business.
The you'll call I'll call places and say, you know, hey, are
you wheelchair cosable and they're like sure, yeah, we only have one step
wow, okay, well, and the the number of times that I've heard,
oh well we were grandfather into the ada. Okay, we're thirty three
years later and you've made no changes to your building ever. Or you can't
spend sixty dollars and buy a ramp, even a portable ramp. I mean
I went into the most seemingly unaccessible places in Paris because my fiance would go
ring the doorbell, that's us, and someone would bring out a ramp.
You're allowed to have a portable ramp for access. It is permissible, you
know. The and people are making poor design choices. I was. I
was in a restaurant in Dallas in the Arts District, and when you opened
the bathroom door, there was a short wall I had, so you'd have
to go in and make a hard write ninety degree turns. Are you with
me? Yeah? I can? I am yeah, I got the visual
on okay, And so you'd get past the door, you'd make that hard,
right ninety The first thing that he came to were the sinks, and
then you'd make a less to go back to the toilet salls. Well,
the door was actually set into the hallway wall at an angle, and so
when the door opened all the way up, it in whack. Who was
ever standing at the sink? Oh god? So to fix this they put
a door stopper in the floor, which reduced the swing of the door.
And when they did that, they made it so now I couldn't get my
power chair through. Oh god. And I had my fiance when we travel,
we go look at bathrooms because that's my that's my main pain point in
life are bathrooms. Yeah, yeah, I mean I know I had friend,
I had a friend who you know, broke her foot and had to
crawl down the steps on her on her butt to go to the bathroom in
a restaurant. Yeah. In in Madrid and in Barcelona and in Paris,
a lot of the bathrooms in places were downstairs, right, and there were
no elevators, you know, So there are some just some bad design choices
being made. And in you know, overseas, that's different, you know,
in Europe it's different. But here in the States, like I shouldn't
have to call to find out you know, what the setup is going to
be like. But in that restaurant in Dallas, I had my fiancee go
in all the way into the bathroom. He's like, this is the biggest
successful sol I've ever seen. It's gorgeous. And you need a swan team.
You need a swant team to an advanced team to check out restaurants other
than restaurants, which I was. I'm fully aware of because I ran the
James Spear Foundation Awards, which included restaurant design awards for many, many years,
and one of the jurors uh was a designer who was disabled. She
had a wheelchair, and she basically said, we will eliminate all restaurants that
do not have a DA considerations, you know, And and that's what opened
my eyes up to it. Plus my friend Yanik, who is in a
wheelchair and running a restaurant, and you know, I'm like, oh my
god, it's like crazy. What about other things? Hotels? Yeah,
hotels, meetings. I was out in Miami and at a meeting where you
broke out into little groups and then they would choose the It was a speaking
It was a thing for public speakers, and they you broke out into little
groups and then they would nominate who was the best, had the best story,
or the best little elevator pitch out of that group so that you could
get up on stage. And then they sent like the eight of these two
hundred and fifty people up on stage. And I pulled the event planner aside
later and I said, where was the ramp? And she said what do
you mean? And I said, if I had been chosen as one of
the eight, where would I in the current setup? Where would I have
had to do my speech from? And she said, oh, on the
floor in front of the stage. I said, right, And how does
that make me look to the everyone else participating? And she said smaller?
I said right? Small? Yeah, literally literally not as tall as everyone
because they're all standing up three feet above me. You so we've created this
visual that I'm small and i'm and because of that, you labeled me as
insignificant And she looked like I'd slapped her face. Now, that wasn't meant
to be harsh for her. It was simply like something that she needed to
consider. And hotel rooms are my other pain point in life. The things
that people consider to be a da the fact that it's still next to impossible
to book an actual accessible room online, which has been the loss since twenty
thirteen. That they're actually supposed to have floor plans for the bedroom bathroom areas
so that I can choose, and the Venetian in Vegas did that. They
actually put up a floor plan and it looks super fantastic, except that they
put the toilet in a toilet room like a water closet, and in doing
that they took away the transfer space, so now I can't actually get close
enough to the toilet to use it. It's like, okay, you need
to consult people who use wheelchairs to actually do this. And there are just
inconsiderate choices. We were just at the Paris in Vegas, at the Paris
Hotel in Las Vegas, I'm just going to call them out, and there
were like twenty or twenty one desks at receptions, and twenty of them were
forty eight inches high and one of them was thirty six inches time. And
when we went to check in, rather than someone saying, oh yes,
let's walk down here to the accessible desk, and no one offered us that
consideration, and when we went down to look at it, it's now actually
the enterprise rental car desk, so they've they put it there because it was
required by the ADA, and then they refuse to use it properly. It
makes me shake my head, and so I don't travel alone anymore for physical
reasons, but also just those kinds of considerations where you know, I actually
need someone who's able to go in and look at things and help with other
stuff. So the you know, that's kind of and and I have a
business called making Waves for Good, right which is and that's what we're that's
what we're doing. And making ways for Good is I want to help businesses
understand the codes. And that's really so valuable. I mean, here's a
good thing. You're taking an inevitability is something you cannot control that's happening to
you, and you're taking your rough waters and your experience to try to help
smooth away for others and teaching people who really don't know. You know,
until you enter this world, you don't understand it. You have to be
tauned. You know, I've said for a long time, and you know,
people don't know what they don't know and they don't know what they don't
think about, and they don't think about what doesn't affect them. Right,
But we all need to be sensitive because we're all on alike. So here's
something interesting to me. I just want to make sure we get in that.
You know, you also defy what people you know again, you you
you know you you explain living with a disability versus disabled, and that's a
big definition. You have done things that many many others have not, and
I was in one of them. Thus, rough Waters is you became a
para surfer, which you know. Why have I tried surfing about kill?
I thought my back hurts so bad for day I couldn't do it. I
couldn't. I can't even as a breast cancer. So if I ever lift
a lot of stuff, why did you choose parasurfing of all things? I
mean, I get the Miss Wheelchair Kentucky pageant, which was awesome. I
happen to like pageants, but the surf parasurfing was a big That was a
big one. So I actually found those at the same time. Uh huh.
I had knew that I was going to be getting a wheelchair because that
was kind of I knew that was coming in the future. So I went
looking for things to do that I could do with a wheelchair, and I
found on video clips where Miss Wheelchair California was going out surfing with this group,
and then there was video of her laying down on a surfboard. So
I will tell you that there is that difference in that I never stand up
on my surfboard, so I never to I never have to pop up.
You also have a team to help you too, because I was thinking,
you know, if you've roll over, you can't swim. I can write
myself okay, so I can kick and I can get my faith out of
the water, but I cannot pull myself back up on a board. And
so because my shoulders are weak, right, and the and so when I've
competed, and that was in twenty eighteen, So the book kind of stopped
in twenty seventeen. It took me six years from finishing the book to actually
get it out into the real world. And that's part of a whole other
rough water story. But so the minimum number of people that I have in
the water is two. So I have someone who will push me onto a
wave and someone who will catch me on the other end of it, and
in Hawaii that can be a really really long way. But the number of
people that takes to get me on my surf for when I fall off and
not that's not if because every server falls off the Bethanie Hamilton just put up
this amazing video of her wiping out fantastically during your competition. So everybody gets
falls off and everybody gets back on a board. It takes five or six
people to flip me back onto a board, people to hold me steady,
people to hold the board steady. The most interesting flip happens is they'll line
me up parallel to the board with my face to the sky and then someone
will literally be under me and flip log roll me onto the back up on
the board. So you have to trust, like really super super trust the
people that you're with because they're in charge of your safety and your physicality.
Yeah, you're safety completely. And it's a team. I mean your life
involve a team. Yeah, contest you enter, I mean you went to
Hawaii. I'm reading this book in Hawaii and you're I'm reading it. How
you actually entered this huge competition in Hawaii. I mean you've been you've been
doing this parasurfing in New Jersey, right, and then you get on a
plane, which is a whole nother story. The plane right, traveling by
playing with the wheelchair and getting Hawaii. How did that go? Not like
I thought it was gonna in so many ways. I ended up traveling with
a manual care of that trip, which meant that I was my independence was
really limited, and so uh that was the the personal care team that I
traveled with. I didn't know those people very well, and I made a
decision not to ever do that again, to not travel with people that I
know really, really well. And I wasn't nearly as strong enough as I
thought I was. I wasn't in in prime surfing condition. I mean,
I was significantly heavier than I should have been, and which means that and
that extra weight limits my own mobility because it makes it harder even for me
to transfer myself and move around. And so it became a point where it
was decided for my safety and for the safety of everybody else that because I
couldn't get on a board by myself and it was going to take a lot
a lot of time. I ended up being in a different part of the
competition than I expected to be. I still caught some really great waves.
I'm trying not to completely you know, spoiler alert that one. But the
point is, Oh, you took the leap, and you did that with
the miss Wheelchair Kentucky. I mean you did the whole pageant thing, which
is a lot of pressure and photography. You know, what is it you
haven't done that you'd like to do? Jump out of an airplane? Seriously,
there are places that will that specialize in helping people with disabilities jump out
of airplanes. So I'm really excited to do that. I want to go
back to I want to go back to London. I want to go to
Budapeste and see my photos in a gallery be hung up at a gallery in
Budapesche. I had some photos up there before, so I'm crossing that figures
we can make that work out. What is your medium with your photography,
Heather? Some digital. I'm using a micro four thirds camera that has interchangeable
lenses, and I chose that because of the weight. I'm really sensitive to
how much things weigh. It has a tilting, rotating screen, so I
actually shoot everything out of my lap, which then by default gives me a
much different angle than you if we were standing side by side. If we're
side by side and you're holding a camera to your faith, my camera is
probably two feet lower than yours. I was out doing some nature photography and
saw another photographer who had a thirty five millimeter and a great big zoom lens,
and they were doing these big tracking shots, so they're following the bird
as it's flying. And that's hard for me as a power wheelchair yeah,
to move and hold and hold my camera and do all that. So I
don't tend to do those type of photos. But the photographer didn't say to
me, oh, man, like, you get to hold your camera steady
all the time, right, and it's and it's got a stable place to
live all the time. It just sits on my leg. I do have
a robotic arm attached to my wheelchair now, which allows me to take my
camera up high level or even higher, and then there's an interface with my
phone to activate the shutter. So I used to have a black and white
dark room set up when I was in my twenties, and I loved it
and I carried it around like it was, you know, a life reserver,
you know one of those orange light bests that you have on coast guard
boats. Like, that's how tightly I held onto my dark room. But
now now I run strictly digital. It's just it's simpler. But I still
have the ability to do all the same creative stuff with software. Wow,
that's amazing. You know, jumping on airplane, really and you found love
you you know, which is good, which is important because I know in
the book it reveals some rocky relationships. You know that there were rocky relationships,
and in the book, I fell in love and then I knew that
that wasn't There were there were challenges there. Yeah, And I ended up
choosing me instead of choosing us because he wasn't able to come to grips with
my muscular districty. He was really struggling with that. Yeah. And I
had chosen him thinking he was my last best shot. And when you believe
that, lie, you'll settle for anything. Wow. And he was a
great guy. In fact, we still talk, so you know, he
just wasn't my guy. Does that make sense? Yeah? I mean,
you know, some people can't deal. It's hard for them. And you
know, if they can't do and and and they can't yeah, you got
to choose. I think you said the most important thing you said, I
chose me. I chose me, and so I when I went back to
school and ended up with my first wheelchair, that's when I chose me.
It turns out that this January, my first love high school boyfriend, resurfaced
and he had been a widower for three years when he reached out to me
through my photography website of all places, and we started dating. We got
engaged in May, and congratulations, that's so wonderful. It's really sweet.
And we're going to write our story because it's complicated. Yeah, you know,
it's more complicated than thirty five years of not talking. Speaking of story,
when did you start writing rough Orders And what was the was it cathartic
for you, what was you know, the process for you emotionally? So
I started writing rough Waters in twenty sixteen, and it was actually a completely
different book in its first dress. In its first run, it was a
book of stories, not a book of the story of me, if that
makes sense. So I told funny stories about my cat bringing in a mouth
and my service dog playing with it and you know, me trying to get
it back out of a house, but not deep stories, and it said
was another editor for a really long time. And then when I got it
to the groups that I started working with last year, they were like,
Okay, there's some stuff here, but it's boy, this is rough and
it needs work. And so we got me in touch with a developmental editor
who said, you know, where's the interiority here? And I said,
I don't, you know, I don't even know what that word means.
So let's start again. She said, what were you thinking here? What
were you feeling here? Right? You know, I'm like, I to
tell those stories and she said, uh, to make this a book that
people are going to connect with. Yeah, you've got to do that.
And so it was cathartic and painful and about the same time. And right
before I turned my book over to this new group, I was working with
a business coach and she said, you know, don't I don't need the
details, but if you had traumatic you know, at least one traumatic event
happened where you decided then that hiding who you are was safest. And I
said, uh, yeah, this and this and this and this and this,
and she said, then I can I suggest that you go get trauma
therapy before we start working really deep, dig in deep on this business thing,
because I think you really need to be seen, and when you let
yourself be seen, it's going to be a beautiful thing. And so I
took a deep breath and I found a counselor who specializes in I E M
D R. It's yeah, yeah, it's trauma. It's eye movement E
M R D. I don't know, so it's bimodal. So you I
was tapping on my legs alternately, and you it's this whole big thing.
It's trauma therapy. They use it for PTSD, even out in the military.
And so I was doing trauma therapy at the same time that I was
rewriting my book. Let me tell you that I would only recommend you do
one or the other, not both at the same time. Trauma therapy would
send me, you know, I would finish my session and I would go
lay in bed and cry for an hour, like tough, really tough stuff,
and then trying to you delved into all of the you know, how
did it feel? Because I'm also a breast cancer survivor, I know,
you know, how did it feel to have them effected me? And you
know, I felt named. Yeah, I felt like a monster. I
didn't want to leave the house. Yeah, you know. And then I
actually knew though that I needed to get back to my fan family. So
and actually going into that surgery, I told my doctor, look, dude,
I have a date with a surfboard in seven weeks, and you have
to help me make that happen because I knew that the water was my healing
place. I have to tell you, Heather, your breast cancer diagnosis struck
a nerve with me because you had something called the Filoades tumor, which I
happened to know about because my best friend had a Flodi's tumor. Unfortunately,
she was not as lucky as you were, and she passed because her cancer
was discovered in an advanced stage because she didn't go get she did. She
ignored it and Filodi's tumors. You're very lucky. You're very You're a very
lucky woman, and I hope that you know, you continue to stay healthy
in that area. It was just a lot. You know, I'm reading
this book and there were a lot of reveals in the book which we don't
forget into. But I'm like, and now she's got breast cancer. It
was tough. And then when I read Felodi's timmer, I'm like, oh,
yeah, that's that's that's rare, dude, that's rare. Rare.
You deal, You're dealing with a lot of rare things. You were picked
to be super special. I guess you know that, you know. I
I make the self deprecating joke. You know, Mama always said I was
special. Yeah, you know, but yeah, nobody needs the kind of
special that I've gotten to be. Yeah, And I will tell you that
the doctors when I run this, run this rare one more, one more
point down the rail, and the doctors have said to me, oh,
by the way, we think that the mustard just me that you have might
be secondary to something we don't know how to find. But we don't think
this is actually the primary cause of your issues. We think it might be
secondary. And I have to tell you that I just kind of broke into
one of those hysterical laughs. It's like, really, this thing that's wiping
out my hips and my shoulders and my hands and my feet and and is
you know that might not be my big thing? Wow? Wow. So
here's what I want to ask you because we're going to have to wrap Heather,
knowing all of this and you've you've lived an astoundingly amazing life. You've
achieved more than many people who you know have the use of their legs and
arms and their full bodies. So congratulations on that. Well, do you
have a mantra or a quote that you live by that motivates you every day?
You know? I have a couple. M One is find your team.
Yeah right, you know, life is a team sport and people are
going to come and go from your team, but the really good ones stay
and they're the ones who will snatch you up and roll you over so that
your faith up to you know that your face is out of the water.
I'm going to use surfing metaphors. Yeah, they keep you afloat. They
keep you afloat, and they keep your head you know, you keep your
head above water basically. Yeah, they help you do that when you know,
when you're really really struggling. And the other thing that I'm really working
on and my monitor is self care is good. Yeah that's mine too,
because I neglected my self care. Well, Heather, we've got to we've
got to wrap up. It's just been a great conversation. I could talk
to you forever. I want to just make sure that my listeners know again
that your name is Heather C. Markham and your your company is making Ways
for Good. The book is Rough Waters from Surviving to Thriving with Progressive Muscular
Dystrophee and your website is Heatherseemarkham dot com. Correct, Yes, all right,
listen. I wish you smooth waters ahead in your life and love,
and thank you for sharing your inspiring story. I hope it will help inspire
others, particularly those who are receiving diagnoses that are knocking them off their feet.
You know it's a choice you make every day. That's yeah, I
make that choice, Dan Tall, no matter where you sit. Thank you
very much for joining me and you've been listening to Fearless Fabulous. You I'm
Melanie Young. You know that life will develop lots of detours, but you
know you have the ability to navigate them if you choose. And life is
about making choices to take care of yourself and live on your terms. So
stay well, stay fearless and fabulous, and please follow me at Melanie Fabulous
on Instagram. Thank you