December 21, 2023 • 50 mins
Competitive para surfer, Heather C. Markham, is no stranger to rough waters. At age 34 she was diagnosed with progressive muscular dystrophy and would eventually require a wheelchair. Heather has defied the odds as a wheelchair user through sports (para surfing and golf), her photography and her advocacy work for individuals living with a disability through her company, Making Waves for Good. Her memoir is "Rough Waters: From Surviving to Thriving with a Progressive Multiple Dystrophy."
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Fearless Fabulous You is broadcast live Wednesdays at 12 Noon ET.
Fearless Fabulous You Radio Show is broadcast on W4WN Radio - Women 4 Women Network (www.w4wn.com) part of Talk 4 Radio (www.talk4radio.com) on the Talk 4 Media Network (www.talk4media.com).
Fearless Fabulous You Podcast is also available on Talk 4 Podcasting (www.talk4podcasting.com), iHeartRadio, Amazon Music, Pandora, Spotify, Audible, and over 100 other podcast outlets.
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W four WN Radio. Hello andwelcome to Fearless Fabulous You. I am
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your host, Melanie Young, andit is a beautiful day in December twenty
twenty three. We are happy tobe reigning in a new year, and
I am really excited about twenty twentyfour, really excited. If you follow
me, you know that I amall about spotlighting amazing women with inspiring stories
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who've overcome odds, changed their livesand have set their course in a new
direction. And gosh, I've doneit 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 simplyhas the most amazing story. Really,
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here's how I'm going to set itup. She's a competitive paraserver, a
golfer, a photographer, a philanthropist, an advocate, and the author of
a book called Rough Waters, FromSurviving to Thriving with Progressive Muscular Dystrophee.
At age thirty four, Heather C. Markham received a life changing diagnosis.
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She had progressive muscular dystrophee that wouldeventually require her using a wheelchair. Her
walking days were going to end muchsooner than she'd expected. Now, I
know people in this situation, andit is hard to live with the progressive
illness. But despite her body's betrayal, because her body was betraying her,
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but her mind is strong, andyou have to remember, just because your
body is betraying you, your mindcan be amazingly strong. Heather fearlessly leaned
into adventure with a capital a performingas a belly dancer, falling in love,
becoming an avid paras server pretty Awesome, winning Missus Wheelchair Kentucky, and
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pursuing her lifelong passion of photography.She shares her story with heartbreaking humor and
a lot of big reveals in RoughOrders From Surviving to thriving with Progressive Muscular
District Fee and I'm really honored tohave her joining me today. I'm fearless,
fabulous. You welcome, Heather.Thank you so much for that amazing
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introduction. I am honored to behere and having the opportunity to have this
really great conversation with you. Thankyou well. As I read your book,
I was in Hawaii watching surfers andI was like, my god,
I can't imagine. You know,I can't even get on a surfboard.
And I have a very good friendin the restaurant business who is a huge
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advocate for those who wheelchair users.He founded an organization called Wheeling Forward.
His name is Sianic Benjamin and hejust won a Michelin Store for his restaurant
contento, which really takes advocacy forthose with disabilities to the highest level possible
with a totally retrofitted restaurant to helpeverybody. And I have a huge sensitivity
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for it because in New York it'snot easy to get around in a wheelchairs.
In most places it's not. Butbefore 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 usabout your family and your childhood. Sure.
So my dad was in the military, and like a typical military brat
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as we're called, right, wemoved every few years. I mean in
the seventies it was three and outlike you. And so that constant moving
that gave me the opportunity to learnhow to reinvent myself. Right, So
you learn how to adapt to yoursituations. You learn quickly how to size
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things up and figure out if you'regoing to fit in, and how to
change your self to fit the environment. Can you give some examples? Oh?
Sure? So I was held backin school because of my October birthday.
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So I was seven years old infirst 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 atape recorder and sent me out for the
teacher's lunge and then had me readingto the other students. Well, that's
a recipe to get yourself beat upat recess, so you know, you
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figure out how to down I figuredout 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 agrade, so now I was really young
to be in third grade. Andonce again you figure out how to fit
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in, and you go, okay, well, I'm an Air Force rat
living at west Point. They theUS Military Academy, which is the Army
school. How do you not runyour mouth that gets you beat up?
That, you know, because Iwas raised Air Force rules and Army sucks.
Well, you say that as athird grader living at West Point,
you're going to get your faith beatenin. So you learned how to not
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say that kind of stuff. Butin the meanwhile, you know, I
played the kids in the neighborhood andand 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
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the medical treatment. Right, Momnoticed that I wasn't healing very quickly,
but that I was like getting hurta lot. And how old were you
when you were falling down? Heather? Oh gosh. Mom called me her
clumsy child, so I was probablyalways falling down. I mean I had
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broken bones at the age of six. I grot my mom at six,
just falling so and Mom called meher brittle boned girl because it was just
kind of strange but muscular dist tobe is genetic, and but no one
else in my family had it,so there was no reason to suspect anything.
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And when we finally in that yearthat we were at West Point,
I was at the er once amonth with something. And it was really
surprising to me looking back, ofcourse that like child Protective Services wasn't called
in, you know, because nowadayswith that kind of a medical record,
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you know that absolutely there would havebeen, you know, there would be
huge scrutiny. But we shared ourmedical records, and I say, there
just wasn't that necessarily necessary follow through, say, not that anyone would have
suspected anything. So were you closeto your parents? Yeah, m hm.
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I My mom worked really hard tomake sure that she was around for
us. So she worked nights inthe 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 girlScout troops m and he was the person
who took me on road trips sothat I could travel for tennis. I
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was a I was championship ranked inthe state of Texas and the girls twelve
and hunders and we were all overthe state of Texas. So and they
supported what I did. They supportedorchestra, and they supported my being in
school plays and you know that kindand support it. So I would say,
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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 alot, I'd be like doing a lot
to find out what the hell's goingon, you know, But you're moving
around a lot. It's probably hardto have relationships, as what I'm thinking,
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when you're moving around a lot.Right, Yes, it's it's very
interesting because there's not a lot toclinge it, right, I mean you
kind of just you know, yourfamily is the stable thing in your life,
and you learn quickly how to makefriends and let go and move on.
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And I have a few friends fromI actually have a few friends from
elementary school, but I still chatwith online, which is fairly amazing.
But it's moving around that much taughtme how to recognize who to keep and
who to let go of. That'sinteresting. I've heard that I've interviewed a
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couple of people that have come frommilitary families, and they've most said that
the you know, establishing long termrelationships 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 thatwas not right with you, and you
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sought further doctors to see what waswrong. So I injured my back at
the age of twenty two when Iwas working custodio, and that seemed to
set off this whole cascade of thingsin my body. There's been some research
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that supports the idea of a traumaticevent triggering a genetic condition, and so
that injury was severe enough that Iwas out of work and I was seen
by a lot, a lot ofa lot of a lot of doctors.
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Unfortunately, how my symptoms presented didn'tlook like a typical back injury, and
so they would send me out tophysical therapy and I would get better as
quickly as they thought I should,or the exercises that the physical therapists having
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to do would fatigue me quickly toeveryone's surprise. And so as time went
on, I actually had doctors sayto me, two of them actually,
one who said, if you hateyour job, this much, and because
I was working with serdial, hesaid, if you hate your job as
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much, you should quit rather thantake an injury, which was, you
know, just really strange to me. Yeah. And another doctor who after
rounds of physical therapy I wasn't reallyprogressing very well, he said, I'm
just going to tell the company thatyou're faking it. Oh God, And
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I just started to cry and hesaid, see, aren't those tears just
really it's a relief. You don'thave to lie anymore. And I said,
you know there's something wrong, andjust because you don't understand it doesn't
mean it's not true. And I'mgonna I'm gonna say something really snarky.
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So I'm just gonna I'm going togive you a snark alert right here.
Snark alert. Okay, snark alert. He's dead of a brain tumor and
I'm still here. Wow. Sothe 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 ownadvocate when you deal with the medical profession.
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If you and you have to push, and you had to push a
lot, you had to push alot because it was yours was a tough
diagnosis to nail down. And Iam not an expert on must muscular dystrophe,
but you have something called limb girdlemuscular dystrophe. So I would assume,
like you know, I'm a breastcancer survivor, so there's emptying different
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kinds of breast cancer. So Iwould safely say there's different kinds of muscular
dystrophe. So you had to naildown 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, sowe are a long way down the road
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by now, there were no specificsabout 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, butit's nothing that we can nail down.
It's not als, it's not dushen, it's not my physiogravits, which is
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a muscot district like, it's notone of those. So we're just going
to call it a limb girdle mustardstto be it's it's going to take out
your hips in your shoulders, butit's really kind of just a garbage hand
term. This is these are thewords the doctor said to me. It's
a garbage hand term. So whatI like, that's a that's kind of
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spooky because you know, because youreally want to know what's going to happen
to me. I mean, you'vebasically 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 yougive me? Like? What? Like,
I'm trying to put myself in yourshoes because I mean, when I
was diagnosed with breast cancer, Ihad a million questions like what is going
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to happen? And and then there'sthose 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 weregoing what is the how is the progression
happening? And where are you nowin this sure So I was walking with
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a cane due to back pain andlosing my So part of the musk hearestry
subtype that I have means that thelong muscles that go from the bottom of
your ribs down to your knees areactually the ones that help you stand up
straight. So that set of musclesis actually getting weak. So I was
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getting more and more bent over.I started using a cane on and off
in oh gosh, let's see nineteenninety, as early as nineteen ninety,
and I got my first wheelchair intwo thousand and eight. Now, the
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literature that I got in twenty intwo thousand and two said limburtle mustard just
to be typically progressed, so thatthe user ends up with a wheelchair twenty
years after onset, and so Ikind of did the math and thought that
I might end up with an extracouple of years in there. I thought
I might have my first wheelchair abouttwenty ten. But I had gone,
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I had run the whole progression fromCain to Cain with ankle foot or foci
supports because I had foot drops andwas dragging my toes and falling down to
getting a roll later, which isone of those walkers that with wheels in
a seat that you can buy atthe costco, right right, yeah.
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And then it wasn't until I soI, let me tell you, I
fought a wheelchair like I just spotit because I had only ever seen a
manual chair, and I knew thatmy shoulders were weak. I had no
idea how I would push a chair. I had no idea how would get
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out of a chair because I washaving difficulties standing up from chairs. And
no one ever said, hey,this isn't how this is going to go
for you. No one, youknow, at no time between two thousand
and two and two thousand and sevendid my neurologists and I ever have a
conversation about what a wheelchair would looklike in my future. And so I
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was just left to, you know, let my brain run them up,
which is never a really good spotwhen you, you know, have a
disease that no one can really pinpoint down for you. But so it's
twenty twenty three. I'm fifty sixyears old now and I use a powerchair
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full time. And I've only everhad a powerchair because everyone was like,
yeah, girl, you're never goingto push yourself. Really, you know,
I can. I can. Ihave a manual chair for travel sometimes
and I can push my way acrossthe pile floor probably fifty yards and I'm
toast. I can done. Andit has to be flat, you know,
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So you ever put if you everput me at a curb cut with
my manual chair, I'd be outinto traffic without being able to stop myself.
But here's the thing. You youhave a life where you are functioning
amazingly. I have to say,you know, I got so the whole
wheelchair thing and the involved process ingetting a wheelchair outffitted for you was for
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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 socomplicated. And at this point, I
have a great, big monster ofa power chair and I just kind of,
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you know, make a joke aboutthe 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 wheelchairbig booty when when I'm in restaurants and
stuff, because I want to makesure that people don't kick the back of
my chair. So I want toask you. I want to ask you
about that. So sure people whodo not have wheelchairs don't understand what people
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who have wheelchairs need and can appearvery insensitive. Yes, And I want
you to talk to us because Iremember 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
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things and challenges and how can peoplebe better? It's kind of a two,
two or three part question, butyou know where I'm going with it,
yep. And let me let meback 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 myday. Wow, So there's no in
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between for me. Do you havesomeone helping you, a caregiver? I
have? I have a caregiver whocomes in three days a week to help
do laundry and clean the house andhelp me shower, but otherwise I live
alone. Wow. Yeah, goodfor you killing it. Thanks, So
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the things that wanted so people,isn't that funny? Let me work.
Let me frame up my words reallycarefully here. Sure, No, it's
not. It's not that so muchas I want to make sure that I'm
really accurate in what I'm trying toconvey. Is that I will say that
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I have a disability, but notthat I am disabled. Good point.
So that's my that's me. Thoseare my choices. I follow follow Matthew
Sanford's language of I sit on mywheelchair and not in my wheelchair. Good
point, because you sit on akitchen chair, not in a kitchen chair,
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right, right. And it's notto say that my wheelchair is a
kitchen chair, but it's to helpconvey 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
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to wherever it is that I wantto go. I mean, we just
flew my backup chair and went toEurope for twelve days. My fiance took
me to Europe. Wow, andwe took that monster powerchair all over you
know, in Madrid, in Barcelonaand Paris. In the States, the
big challenge is just plain access.And you know, there are still restaurants
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that don't have accessible bathrooms. Iknow, 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 togo 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'tfeel like you actually value my business.
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The you'll call I'll call places andsay, you know, hey, are
you wheelchair cosable and they're like sure, yeah, we only have one step
wow, okay, well, andthe the number of times that I've heard,
oh well we were grandfather into theada. Okay, we're thirty three
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years later and you've made no changesto 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 unaccessibleplaces in Paris because my fiance would go
ring the doorbell, that's us,and someone would bring out a ramp.
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You're allowed to have a portable rampfor access. It is permissible, you
know. The and people are makingpoor design choices. I was. I
was in a restaurant in Dallas inthe Arts District, and when you opened
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the bathroom door, there was ashort wall I had, so you'd have
to go in and make a hardwrite ninety degree turns. Are you with
me? Yeah? I can?I am yeah, I got the visual
on okay, And so you'd getpast the door, you'd make that hard,
right ninety The first thing that hecame to were the sinks, and
then you'd make a less to goback to the toilet salls. Well,
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the door was actually set into thehallway wall at an angle, and so
when the door opened all the wayup, it in whack. Who was
ever standing at the sink? Ohgod? So to fix this they put
a door stopper in the floor,which reduced the swing of the door.
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And when they did that, theymade 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'smy that's my main pain point in
life are bathrooms. Yeah, yeah, I mean I know I had friend,
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I had a friend who you know, broke her foot and had to
crawl down the steps on her onher butt to go to the bathroom in
a restaurant. Yeah. In inMadrid and in Barcelona and in Paris,
a lot of the bathrooms in placeswere downstairs, right, and there were
no elevators, you know, Sothere are some just some bad design choices
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being made. And in you know, overseas, that's different, you know,
in Europe it's different. But herein the States, like I shouldn't
have to call to find out youknow, what the setup is going to
be like. But in that restaurantin 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'sgorgeous. And you need a swan team.
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You need a swant team to anadvanced 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 includedrestaurant design awards for many, many years,
and one of the jurors uh wasa designer who was disabled. She
had a wheelchair, and she basicallysaid, we will eliminate all restaurants that
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do not have a DA considerations,you know, And and that's what opened
my eyes up to it. Plusmy friend Yanik, who is in a
wheelchair and running a restaurant, andyou know, I'm like, oh my
god, it's like crazy. Whatabout other things? Hotels? Yeah,
hotels, meetings. I was outin Miami and at a meeting where you
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broke out into little groups and thenthey 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 whowas the best, had the best story,
or the best little elevator pitch outof that group so that you could
get up on stage. And thenthey sent like the eight of these two
hundred and fifty people up on stage. And I pulled the event planner aside
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later and I said, where wasthe ramp? And she said what do
you mean? And I said,if I had been chosen as one of
the eight, where would I inthe 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
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that make me look to the everyoneelse participating? And she said smaller?
I said right? Small? Yeah, literally literally not as tall as everyone
because they're all standing up three feetabove me. You so we've created this
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visual that I'm small and i'm andbecause of that, you labeled me as
insignificant And she looked like I'd slappedher face. Now, that wasn't meant
to be harsh for her. Itwas simply like something that she needed to
consider. And hotel rooms are myother pain point in life. The things
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that people consider to be a dathe 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 tohave floor plans for the bedroom bathroom areas
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so that I can choose, andthe Venetian in Vegas did that. They
actually put up a floor plan andit looks super fantastic, except that they
put the toilet in a toilet roomlike a water closet, and in doing
that they took away the transfer space, so now I can't actually get close
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enough to the toilet to use it. It's like, okay, you need
to consult people who use wheelchairs toactually do this. And there are just
inconsiderate choices. We were just atthe Paris in Vegas, at the Paris
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Hotel in Las Vegas, I'm justgoing to call them out, and there
were like twenty or twenty one desksat receptions, and twenty of them were
forty eight inches high and one ofthem was thirty six inches time. And
when we went to check in,rather than someone saying, oh yes,
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let's walk down here to the accessibledesk, and no one offered us that
consideration, and when we went downto look at it, it's now actually
the enterprise rental car desk, sothey've they put it there because it was
required by the ADA, and thenthey refuse to use it properly. It
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makes me shake my head, andso I don't travel alone anymore for physical
reasons, but also just those kindsof considerations where you know, I actually
need someone who's able to go inand look at things and help with other
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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 waysfor Good is I want to help businesses
understand the codes. And that's reallyso valuable. I mean, here's a
good thing. You're taking an inevitabilityis something you cannot control that's happening to
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you, and you're taking your roughwaters and your experience to try to help
smooth away for others and teaching peoplewho really don't know. You know,
until you enter this world, youdon't understand it. You have to be
tauned. You know, I've saidfor a long time, and you know,
people don't know what they don't knowand they don't know what they don't
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think about, and they don't thinkabout what doesn't affect them. Right,
But we all need to be sensitivebecause we're all on alike. So here's
something interesting to me. I justwant to make sure we get in that.
You know, you also defy whatpeople you know again, you you
you know you you explain living witha disability versus disabled, and that's a
big definition. You have done thingsthat many many others have not, and
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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 badfor day I couldn't do it. I
couldn't. I can't even as abreast cancer. So if I ever lift
a lot of stuff, why didyou choose parasurfing of all things? I
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mean, I get the Miss WheelchairKentucky pageant, which was awesome. I
happen to like pageants, but thesurf parasurfing was a big That was a
big one. So I actually foundthose at the same time. Uh huh.
I had knew that I was goingto be getting a wheelchair because that
was kind of I knew that wascoming in the future. So I went
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looking for things to do that Icould do with a wheelchair, and I
found on video clips where Miss WheelchairCalifornia was going out surfing with this group,
and then there was video of herlaying down on a surfboard. So
I will tell you that there isthat difference in that I never stand up
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on my surfboard, so I neverto I never have to pop up.
You also have a team to helpyou too, because I was thinking,
you know, if you've roll over, you can't swim. I can write
myself okay, so I can kickand I can get my faith out of
the water, but I cannot pullmyself back up on a board. And
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so because my shoulders are weak,right, and the and so when I've
competed, and that was in twentyeighteen, So the book kind of stopped
in twenty seventeen. It took mesix years from finishing the book to actually
get it out into the real world. And that's part of a whole other
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rough water story. But so theminimum number of people that I have in
the water is two. So Ihave someone who will push me onto a
wave and someone who will catch meon the other end of it, and
in Hawaii that can be a reallyreally long way. But the number of
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people that takes to get me onmy surf for when I fall off and
not that's not if because every serverfalls off the Bethanie Hamilton just put up
this amazing video of her wiping outfantastically during your competition. So everybody gets
falls off and everybody gets back ona board. It takes five or six
people to flip me back onto aboard, people to hold me steady,
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people to hold the board steady.The most interesting flip happens is they'll line
me up parallel to the board withmy face to the sky and then someone
will literally be under me and fliplog roll me onto the back up on
the board. So you have totrust, like really super super trust the
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people that you're with because they're incharge of your safety and your physicality.
Yeah, you're safety completely. Andit's a team. I mean your life
involve a team. Yeah, contestyou enter, I mean you went to
Hawaii. I'm reading this book inHawaii and you're I'm reading it. How
you actually entered this huge competition inHawaii. I mean you've been you've been
(35:07):
doing this parasurfing in New Jersey,right, and then you get on a
plane, which is a whole notherstory. The plane right, traveling by
playing with the wheelchair and getting Hawaii. How did that go? Not like
I thought it was gonna in somany ways. I ended up traveling with
(35:29):
a manual care of that trip,which meant that I was my independence was
really limited, and so uh thatwas the the personal care team that I
traveled with. I didn't know thosepeople very well, and I made a
decision not to ever do that again, to not travel with people that I
know really, really well. AndI wasn't nearly as strong enough as I
(35:54):
thought I was. I wasn't inin prime surfing condition. I mean,
I was significantly heavier than I shouldhave been, and which means that and
that extra weight limits my own mobilitybecause it makes it harder even for me
(36:15):
to transfer myself and move around.And so it became a point where it
was decided for my safety and forthe safety of everybody else that because I
couldn't get on a board by myselfand it was going to take a lot
(36:35):
a lot of time. I endedup 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 tookthe leap, and you did that with
the miss Wheelchair Kentucky. I meanyou did the whole pageant thing, which
(36:59):
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 specializein helping people with disabilities jump out
of airplanes. So I'm really excitedto do that. I want to go
(37:23):
back to I want to go backto London. I want to go to
Budapeste and see my photos in agallery be hung up at a gallery in
Budapesche. I had some photos upthere 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 usinga micro four thirds camera that has interchangeable
(37:46):
lenses, and I chose that becauseof the weight. I'm really sensitive to
how much things weigh. It hasa 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 wewere standing side by side. If we're
(38:07):
side by side and you're holding acamera 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 thirtyfive millimeter and a great big zoom lens,
and they were doing these big trackingshots, so they're following the bird
(38:29):
as it's flying. And that's hardfor me as a power wheelchair yeah,
to move and hold and hold mycamera and do all that. So I
don't tend to do those type ofphotos. But the photographer didn't say to
me, oh, man, like, you get to hold your camera steady
all the time, right, andit's and it's got a stable place to
(38:50):
live all the time. It justsits on my leg. I do have
a robotic arm attached to my wheelchairnow, 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. SoI used to have a black and white
dark room set up when I wasin my twenties, and I loved it
(39:15):
and I carried it around like itwas, you know, a life reserver,
you know one of those orange lightbests that you have on coast guard
boats. Like, that's how tightlyI 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 thesame creative stuff with software. Wow,
(39:38):
that's amazing. You know, jumpingon 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 fellin love and then I knew that
(40:01):
that wasn't There were there were challengesthere. Yeah, And I ended up
choosing me instead of choosing us becausehe wasn't able to come to grips with
my muscular districty. He was reallystruggling with that. Yeah. And I
(40:22):
had chosen him thinking he was mylast best shot. And when you believe
that, lie, you'll settle foranything. Wow. And he was a
great guy. In fact, westill talk, so you know, he
just wasn't my guy. Does thatmake sense? Yeah? I mean,
you know, some people can't deal. It's hard for them. And you
(40:49):
know, if they can't do andand and they can't yeah, you got
to choose. I think you saidthe 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 firstwheelchair, that's when I chose me.
It turns out that this January,my first love high school boyfriend, resurfaced
(41:15):
and he had been a widower forthree 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 storybecause it's complicated. Yeah, you know,
(41:37):
it's more complicated than thirty five yearsof not talking. Speaking of story,
when did you start writing rough OrdersAnd what was the was it cathartic
for you, what was you know, the process for you emotionally? So
I started writing rough Waters in twentysixteen, and it was actually a completely
(41:59):
different book in its first dress.In its first run, it was a
book of stories, not a bookof the story of me, if that
makes sense. So I told funnystories about my cat bringing in a mouth
and my service dog playing with itand you know, me trying to get
(42:21):
it back out of a house,but not deep stories, and it said
was another editor for a really longtime. And then when I got it
to the groups that I started workingwith last year, they were like,
Okay, there's some stuff here,but it's boy, this is rough and
it needs work. And so wegot me in touch with a developmental editor
(42:43):
who said, you know, where'sthe interiority here? And I said,
I don't, you know, Idon'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.
(43:07):
And so it was cathartic and painfuland about the same time. And right
before I turned my book over tothis new group, I was working with
a business coach and she said,you know, don't I don't need the
(43:28):
details, but if you had traumaticyou know, at least one traumatic event
happened where you decided then that hidingwho you are was safest. And I
said, uh, yeah, thisand this and this and this and this,
and she said, then I canI suggest that you go get trauma
therapy before we start working really deep, dig in deep on this business thing,
(43:53):
because I think you really need tobe seen, and when you let
yourself be seen, it's going tobe a beautiful thing. And so I
took a deep breath and I founda counselor who specializes in I E M
D R. It's yeah, yeah, it's trauma. It's eye movement E
(44:21):
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 itfor PTSD, even out in the military.
And so I was doing trauma therapyat the same time that I was
rewriting my book. Let me tellyou that I would only recommend you do
(44:45):
one or the other, not bothat the same time. Trauma therapy would
send me, you know, Iwould finish my session and I would go
lay in bed and cry for anhour, like tough, really tough stuff,
and then trying to you delved intoall of the you know, how
did it feel? Because I'm alsoa breast cancer survivor, I know,
(45:08):
you know, how did it feelto 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
(45:29):
actually knew though that I needed toget back to my fan family. So
and actually going into that surgery,I told my doctor, look, dude,
I have a date with a surfboardin seven weeks, and you have
to help me make that happen becauseI knew that the water was my healing
place. I have to tell you, Heather, your breast cancer diagnosis struck
(45:50):
a nerve with me because you hadsomething called the Filoades tumor, which I
happened to know about because my bestfriend had a Flodi's tumor. Unfortunately,
she was not as lucky as youwere, and she passed because her cancer
was discovered in an advanced stage becauseshe didn't go get she did. She
ignored it and Filodi's tumors. You'revery lucky. You're very You're a very
(46:13):
lucky woman, and I hope thatyou know, you continue to stay healthy
in that area. It was justa lot. You know, I'm reading
this book and there were a lotof 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 Iread Felodi's timmer, I'm like, oh,
yeah, that's that's that's rare,dude, that's rare. Rare.
(46:36):
You deal, You're dealing with alot of rare things. You were picked
to be super special. I guessyou 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
(46:59):
the doctors when I run this,run this rare one more, one more
point down the rail, and thedoctors have said to me, oh,
by the way, we think thatthe mustard just me that you have might
be secondary to something we don't knowhow to find. But we don't think
this is actually the primary cause ofyour issues. We think it might be
(47:21):
secondary. And I have to tellyou that I just kind of broke into
one of those hysterical laughs. It'slike, really, this thing that's wiping
out my hips and my shoulders andmy hands and my feet and and is
you know that might not be mybig thing? Wow? Wow. So
here's what I want to ask youbecause we're going to have to wrap Heather,
(47:44):
knowing all of this and you've you'velived an astoundingly amazing life. You've
achieved more than many people who youknow have the use of their legs and
arms and their full bodies. Socongratulations on that. Well, do you
have a mantra or a quote thatyou live by that motivates you every day?
(48:04):
You know? I have a couple. M One is find your team.
Yeah right, you know, lifeis a team sport and people are
going to come and go from yourteam, but the really good ones stay
and they're the ones who will snatchyou up and roll you over so that
your faith up to you know thatyour face is out of the water.
(48:27):
I'm going to use surfing metaphors.Yeah, they keep you afloat. They
keep you afloat, and they keepyour 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. Andthe other thing that I'm really working
on and my monitor is self careis good. Yeah that's mine too,
(48:52):
because I neglected my self care.Well, Heather, we've got to we've
got to wrap up. It's justbeen a great conversation. I could talk
to you forever. I want tojust make sure that my listeners know again
that your name is Heather C.Markham and your your company is making Ways
(49:12):
for Good. The book is RoughWaters from Surviving to Thriving with Progressive Muscular
Dystrophee and your website is Heatherseemarkham dotcom. Correct, Yes, all right,
listen. I wish you smooth watersahead in your life and love,
and thank you for sharing your inspiringstory. I hope it will help inspire
(49:37):
others, particularly those who are receivingdiagnoses that are knocking them off their feet.
You know it's a choice you makeevery day. That's yeah, I
make that choice, Dan Tall,no matter where you sit. Thank you
very much for joining me and you'vebeen listening to Fearless Fabulous. You I'm
Melanie Young. You know that lifewill develop lots of detours, but you
(50:01):
know you have the ability to navigatethem if you choose. And life is
about making choices to take care ofyourself and live on your terms. So
stay well, stay fearless and fabulous, and please follow me at Melanie Fabulous
on Instagram. Thank you
The topics and opinions expressed on thefollowing show are solely those of the hosts
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questions or comment should be directed tothose show hosts. Thank you for choosing
(00:22):
W four WN Radio. Hello andwelcome to Fearless Fabulous You. I am
(00:46):
your host, Melanie Young, andit is a beautiful day in December twenty
twenty three. We are happy tobe reigning in a new year, and
I am really excited about twenty twentyfour, really excited. If you follow
me, you know that I amall about spotlighting amazing women with inspiring stories
(01:08):
who've overcome odds, changed their livesand have set their course in a new
direction. And gosh, I've doneit 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 simplyhas the most amazing story. Really,
(01:30):
here's how I'm going to set itup. She's a competitive paraserver, a
golfer, a photographer, a philanthropist, an advocate, and the author of
a book called Rough Waters, FromSurviving to Thriving with Progressive Muscular Dystrophee.
At age thirty four, Heather C. Markham received a life changing diagnosis.
(01:52):
She had progressive muscular dystrophee that wouldeventually require her using a wheelchair. Her
walking days were going to end muchsooner than she'd expected. Now, I
know people in this situation, andit is hard to live with the progressive
illness. But despite her body's betrayal, because her body was betraying her,
(02:14):
but her mind is strong, andyou have to remember, just because your
body is betraying you, your mindcan be amazingly strong. Heather fearlessly leaned
into adventure with a capital a performingas a belly dancer, falling in love,
becoming an avid paras server pretty Awesome, winning Missus Wheelchair Kentucky, and
(02:35):
pursuing her lifelong passion of photography.She shares her story with heartbreaking humor and
a lot of big reveals in RoughOrders From Surviving to thriving with Progressive Muscular
District Fee and I'm really honored tohave her joining me today. I'm fearless,
fabulous. You welcome, Heather.Thank you so much for that amazing
(02:57):
introduction. I am honored to behere and having the opportunity to have this
really great conversation with you. Thankyou well. As I read your book,
I was in Hawaii watching surfers andI was like, my god,
I can't imagine. You know,I can't even get on a surfboard.
And I have a very good friendin the restaurant business who is a huge
(03:23):
advocate for those who wheelchair users.He founded an organization called Wheeling Forward.
His name is Sianic Benjamin and hejust won a Michelin Store for his restaurant
contento, which really takes advocacy forthose with disabilities to the highest level possible
with a totally retrofitted restaurant to helpeverybody. And I have a huge sensitivity
(03:46):
for it because in New York it'snot easy to get around in a wheelchairs.
In most places it's not. Butbefore 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 usabout your family and your childhood. Sure.
So my dad was in the military, and like a typical military brat
(04:11):
as we're called, right, wemoved every few years. I mean in
the seventies it was three and outlike you. And so that constant moving
that gave me the opportunity to learnhow to reinvent myself. Right, So
you learn how to adapt to yoursituations. You learn quickly how to size
(04:35):
things up and figure out if you'regoing to fit in, and how to
change your self to fit the environment. Can you give some examples? Oh?
Sure? So I was held backin school because of my October birthday.
(04:58):
So I was seven years old infirst 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 atape recorder and sent me out for the
teacher's lunge and then had me readingto the other students. Well, that's
a recipe to get yourself beat upat recess, so you know, you
(05:21):
figure out how to down I figuredout 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 agrade, so now I was really young
to be in third grade. Andonce again you figure out how to fit
(05:42):
in, and you go, okay, well, I'm an Air Force rat
living at west Point. They theUS Military Academy, which is the Army
school. How do you not runyour mouth that gets you beat up?
That, you know, because Iwas raised Air Force rules and Army sucks.
Well, you say that as athird grader living at West Point,
you're going to get your faith beatenin. So you learned how to not
(06:04):
say that kind of stuff. Butin the meanwhile, you know, I
played the kids in the neighborhood andand 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
(06:27):
the medical treatment. Right, Momnoticed that I wasn't healing very quickly,
but that I was like getting hurta lot. And how old were you
when you were falling down? Heather? Oh gosh. Mom called me her
clumsy child, so I was probablyalways falling down. I mean I had
(06:48):
broken bones at the age of six. I grot my mom at six,
just falling so and Mom called meher brittle boned girl because it was just
kind of strange but muscular dist tobe is genetic, and but no one
else in my family had it,so there was no reason to suspect anything.
(07:12):
And when we finally in that yearthat we were at West Point,
I was at the er once amonth with something. And it was really
surprising to me looking back, ofcourse that like child Protective Services wasn't called
in, you know, because nowadayswith that kind of a medical record,
(07:36):
you know that absolutely there would havebeen, you know, there would be
huge scrutiny. But we shared ourmedical records, and I say, there
just wasn't that necessarily necessary follow through, say, not that anyone would have
suspected anything. So were you closeto your parents? Yeah, m hm.
(08:03):
I My mom worked really hard tomake sure that she was around for
us. So she worked nights inthe 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 girlScout troops m and he was the person
who took me on road trips sothat I could travel for tennis. I
(08:28):
was a I was championship ranked inthe state of Texas and the girls twelve
and hunders and we were all overthe state of Texas. So and they
supported what I did. They supportedorchestra, and they supported my being in
school plays and you know that kindand support it. So I would say,
(08:52):
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 alot, I'd be like doing a lot
to find out what the hell's goingon, you know, But you're moving
around a lot. It's probably hardto have relationships, as what I'm thinking,
(09:13):
when you're moving around a lot.Right, Yes, it's it's very
interesting because there's not a lot toclinge it, right, I mean you
kind of just you know, yourfamily is the stable thing in your life,
and you learn quickly how to makefriends and let go and move on.
(09:37):
And I have a few friends fromI actually have a few friends from
elementary school, but I still chatwith online, which is fairly amazing.
But it's moving around that much taughtme how to recognize who to keep and
who to let go of. That'sinteresting. I've heard that I've interviewed a
(10:00):
couple of people that have come frommilitary families, and they've most said that
the you know, establishing long termrelationships 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 thatwas not right with you, and you
(10:20):
sought further doctors to see what waswrong. So I injured my back at
the age of twenty two when Iwas working custodio, and that seemed to
set off this whole cascade of thingsin my body. There's been some research
(10:41):
that supports the idea of a traumaticevent triggering a genetic condition, and so
that injury was severe enough that Iwas out of work and I was seen
by a lot, a lot ofa lot of a lot of doctors.
(11:05):
Unfortunately, how my symptoms presented didn'tlook like a typical back injury, and
so they would send me out tophysical therapy and I would get better as
quickly as they thought I should,or the exercises that the physical therapists having
(11:26):
to do would fatigue me quickly toeveryone's surprise. And so as time went
on, I actually had doctors sayto me, two of them actually,
one who said, if you hateyour job, this much, and because
I was working with serdial, hesaid, if you hate your job as
(11:48):
much, you should quit rather thantake an injury, which was, you
know, just really strange to me. Yeah. And another doctor who after
rounds of physical therapy I wasn't reallyprogressing very well, he said, I'm
just going to tell the company thatyou're faking it. Oh God, And
(12:09):
I just started to cry and hesaid, see, aren't those tears just
really it's a relief. You don'thave to lie anymore. And I said,
you know there's something wrong, andjust because you don't understand it doesn't
mean it's not true. And I'mgonna I'm gonna say something really snarky.
(12:31):
So I'm just gonna I'm going togive you a snark alert right here.
Snark alert. Okay, snark alert. He's dead of a brain tumor and
I'm still here. Wow. Sothe 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 ownadvocate when you deal with the medical profession.
(12:54):
If you and you have to push, and you had to push a
lot, you had to push alot because it was yours was a tough
diagnosis to nail down. And Iam not an expert on must muscular dystrophe,
but you have something called limb girdlemuscular dystrophe. So I would assume,
like you know, I'm a breastcancer survivor, so there's emptying different
(13:16):
kinds of breast cancer. So Iwould safely say there's different kinds of muscular
dystrophe. So you had to naildown 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, sowe are a long way down the road
(13:37):
by now, there were no specificsabout 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, butit's nothing that we can nail down.
It's not als, it's not dushen, it's not my physiogravits, which is
(14:00):
a muscot district like, it's notone of those. So we're just going
to call it a limb girdle mustardstto be it's it's going to take out
your hips in your shoulders, butit's really kind of just a garbage hand
term. This is these are thewords the doctor said to me. It's
a garbage hand term. So whatI like, that's a that's kind of
(14:20):
spooky because you know, because youreally want to know what's going to happen
to me. I mean, you'vebasically 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 yougive me? Like? What? Like,
I'm trying to put myself in yourshoes because I mean, when I
was diagnosed with breast cancer, Ihad a million questions like what is going
(14:43):
to happen? And and then there'sthose 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 weregoing what is the how is the progression
happening? And where are you nowin this sure So I was walking with
(15:07):
a cane due to back pain andlosing my So part of the musk hearestry
subtype that I have means that thelong muscles that go from the bottom of
your ribs down to your knees areactually the ones that help you stand up
straight. So that set of musclesis actually getting weak. So I was
(15:31):
getting more and more bent over.I started using a cane on and off
in oh gosh, let's see nineteenninety, as early as nineteen ninety,
and I got my first wheelchair intwo thousand and eight. Now, the
(15:56):
literature that I got in twenty intwo thousand and two said limburtle mustard just
to be typically progressed, so thatthe user ends up with a wheelchair twenty
years after onset, and so Ikind of did the math and thought that
I might end up with an extracouple of years in there. I thought
I might have my first wheelchair abouttwenty ten. But I had gone,
(16:22):
I had run the whole progression fromCain to Cain with ankle foot or foci
supports because I had foot drops andwas dragging my toes and falling down to
getting a roll later, which isone of those walkers that with wheels in
a seat that you can buy atthe costco, right right, yeah.
(16:45):
And then it wasn't until I soI, let me tell you, I
fought a wheelchair like I just spotit because I had only ever seen a
manual chair, and I knew thatmy shoulders were weak. I had no
idea how I would push a chair. I had no idea how would get
(17:07):
out of a chair because I washaving difficulties standing up from chairs. And
no one ever said, hey,this isn't how this is going to go
for you. No one, youknow, at no time between two thousand
and two and two thousand and sevendid my neurologists and I ever have a
conversation about what a wheelchair would looklike in my future. And so I
(17:34):
was just left to, you know, let my brain run them up,
which is never a really good spotwhen you, you know, have a
disease that no one can really pinpoint down for you. But so it's
twenty twenty three. I'm fifty sixyears old now and I use a powerchair
(17:55):
full time. And I've only everhad a powerchair because everyone was like,
yeah, girl, you're never goingto push yourself. Really, you know,
I can. I can. Ihave a manual chair for travel sometimes
and I can push my way acrossthe pile floor probably fifty yards and I'm
toast. I can done. Andit has to be flat, you know,
(18:19):
So you ever put if you everput me at a curb cut with
my manual chair, I'd be outinto traffic without being able to stop myself.
But here's the thing. You youhave a life where you are functioning
amazingly. I have to say,you know, I got so the whole
wheelchair thing and the involved process ingetting a wheelchair outffitted for you was for
(18:42):
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 socomplicated. And at this point, I
have a great, big monster ofa power chair and I just kind of,
(19:07):
you know, make a joke aboutthe 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 wheelchairbig booty when when I'm in restaurants and
stuff, because I want to makesure that people don't kick the back of
my chair. So I want toask you. I want to ask you
about that. So sure people whodo not have wheelchairs don't understand what people
(19:37):
who have wheelchairs need and can appearvery insensitive. Yes, And I want
you to talk to us because Iremember 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
(19:57):
things and challenges and how can peoplebe better? It's kind of a two,
two or three part question, butyou know where I'm going with it,
yep. And let me let meback 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 myday. Wow, So there's no in
(20:18):
between for me. Do you havesomeone helping you, a caregiver? I
have? I have a caregiver whocomes in three days a week to help
do laundry and clean the house andhelp me shower, but otherwise I live
alone. Wow. Yeah, goodfor you killing it. Thanks, So
(20:38):
the things that wanted so people,isn't that funny? Let me work.
Let me frame up my words reallycarefully here. Sure, No, it's
not. It's not that so muchas I want to make sure that I'm
really accurate in what I'm trying toconvey. Is that I will say that
(21:00):
I have a disability, but notthat I am disabled. Good point.
So that's my that's me. Thoseare my choices. I follow follow Matthew
Sanford's language of I sit on mywheelchair and not in my wheelchair. Good
point, because you sit on akitchen chair, not in a kitchen chair,
(21:25):
right, right. And it's notto say that my wheelchair is a
kitchen chair, but it's to helpconvey 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
(21:45):
to wherever it is that I wantto go. I mean, we just
flew my backup chair and went toEurope for twelve days. My fiance took
me to Europe. Wow, andwe took that monster powerchair all over you
know, in Madrid, in Barcelonaand Paris. In the States, the
big challenge is just plain access.And you know, there are still restaurants
(22:14):
that don't have accessible bathrooms. Iknow, 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 togo 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'tfeel like you actually value my business.
(22:41):
The you'll call I'll call places andsay, you know, hey, are
you wheelchair cosable and they're like sure, yeah, we only have one step
wow, okay, well, andthe the number of times that I've heard,
oh well we were grandfather into theada. Okay, we're thirty three
(23:03):
years later and you've made no changesto 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 unaccessibleplaces in Paris because my fiance would go
ring the doorbell, that's us,and someone would bring out a ramp.
(23:26):
You're allowed to have a portable rampfor access. It is permissible, you
know. The and people are makingpoor design choices. I was. I
was in a restaurant in Dallas inthe Arts District, and when you opened
(23:48):
the bathroom door, there was ashort wall I had, so you'd have
to go in and make a hardwrite ninety degree turns. Are you with
me? Yeah? I can?I am yeah, I got the visual
on okay, And so you'd getpast the door, you'd make that hard,
right ninety The first thing that hecame to were the sinks, and
then you'd make a less to goback to the toilet salls. Well,
(24:11):
the door was actually set into thehallway wall at an angle, and so
when the door opened all the wayup, it in whack. Who was
ever standing at the sink? Ohgod? So to fix this they put
a door stopper in the floor,which reduced the swing of the door.
(24:37):
And when they did that, theymade 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'smy that's my main pain point in
life are bathrooms. Yeah, yeah, I mean I know I had friend,
(24:59):
I had a friend who you know, broke her foot and had to
crawl down the steps on her onher butt to go to the bathroom in
a restaurant. Yeah. In inMadrid and in Barcelona and in Paris,
a lot of the bathrooms in placeswere downstairs, right, and there were
no elevators, you know, Sothere are some just some bad design choices
(25:22):
being made. And in you know, overseas, that's different, you know,
in Europe it's different. But herein the States, like I shouldn't
have to call to find out youknow, what the setup is going to
be like. But in that restaurantin 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'sgorgeous. And you need a swan team.
(25:48):
You need a swant team to anadvanced 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 includedrestaurant design awards for many, many years,
and one of the jurors uh wasa designer who was disabled. She
had a wheelchair, and she basicallysaid, we will eliminate all restaurants that
(26:14):
do not have a DA considerations,you know, And and that's what opened
my eyes up to it. Plusmy friend Yanik, who is in a
wheelchair and running a restaurant, andyou know, I'm like, oh my
god, it's like crazy. Whatabout other things? Hotels? Yeah,
hotels, meetings. I was outin Miami and at a meeting where you
(26:41):
broke out into little groups and thenthey 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 whowas the best, had the best story,
or the best little elevator pitch outof that group so that you could
get up on stage. And thenthey sent like the eight of these two
hundred and fifty people up on stage. And I pulled the event planner aside
(27:04):
later and I said, where wasthe ramp? And she said what do
you mean? And I said,if I had been chosen as one of
the eight, where would I inthe 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
(27:26):
that make me look to the everyoneelse participating? And she said smaller?
I said right? Small? Yeah, literally literally not as tall as everyone
because they're all standing up three feetabove me. You so we've created this
(27:49):
visual that I'm small and i'm andbecause of that, you labeled me as
insignificant And she looked like I'd slappedher face. Now, that wasn't meant
to be harsh for her. Itwas simply like something that she needed to
consider. And hotel rooms are myother pain point in life. The things
(28:17):
that people consider to be a dathe 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 tohave floor plans for the bedroom bathroom areas
(28:38):
so that I can choose, andthe Venetian in Vegas did that. They
actually put up a floor plan andit looks super fantastic, except that they
put the toilet in a toilet roomlike a water closet, and in doing
that they took away the transfer space, so now I can't actually get close
(29:00):
enough to the toilet to use it. It's like, okay, you need
to consult people who use wheelchairs toactually do this. And there are just
inconsiderate choices. We were just atthe Paris in Vegas, at the Paris
(29:22):
Hotel in Las Vegas, I'm justgoing to call them out, and there
were like twenty or twenty one desksat receptions, and twenty of them were
forty eight inches high and one ofthem was thirty six inches time. And
when we went to check in,rather than someone saying, oh yes,
(29:45):
let's walk down here to the accessibledesk, and no one offered us that
consideration, and when we went downto look at it, it's now actually
the enterprise rental car desk, sothey've they put it there because it was
required by the ADA, and thenthey refuse to use it properly. It
(30:08):
makes me shake my head, andso I don't travel alone anymore for physical
reasons, but also just those kindsof considerations where you know, I actually
need someone who's able to go inand look at things and help with other
(30:33):
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 waysfor Good is I want to help businesses
understand the codes. And that's reallyso valuable. I mean, here's a
good thing. You're taking an inevitabilityis something you cannot control that's happening to
(30:59):
you, and you're taking your roughwaters and your experience to try to help
smooth away for others and teaching peoplewho really don't know. You know,
until you enter this world, youdon't understand it. You have to be
tauned. You know, I've saidfor a long time, and you know,
people don't know what they don't knowand they don't know what they don't
(31:22):
think about, and they don't thinkabout what doesn't affect them. Right,
But we all need to be sensitivebecause we're all on alike. So here's
something interesting to me. I justwant to make sure we get in that.
You know, you also defy whatpeople you know again, you you
you know you you explain living witha disability versus disabled, and that's a
big definition. You have done thingsthat many many others have not, and
(31:48):
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 badfor day I couldn't do it. I
couldn't. I can't even as abreast cancer. So if I ever lift
a lot of stuff, why didyou choose parasurfing of all things? I
(32:08):
mean, I get the Miss WheelchairKentucky pageant, which was awesome. I
happen to like pageants, but thesurf parasurfing was a big That was a
big one. So I actually foundthose at the same time. Uh huh.
I had knew that I was goingto be getting a wheelchair because that
was kind of I knew that wascoming in the future. So I went
(32:30):
looking for things to do that Icould do with a wheelchair, and I
found on video clips where Miss WheelchairCalifornia was going out surfing with this group,
and then there was video of herlaying down on a surfboard. So
I will tell you that there isthat difference in that I never stand up
(32:50):
on my surfboard, so I neverto I never have to pop up.
You also have a team to helpyou too, because I was thinking,
you know, if you've roll over, you can't swim. I can write
myself okay, so I can kickand I can get my faith out of
the water, but I cannot pullmyself back up on a board. And
(33:12):
so because my shoulders are weak,right, and the and so when I've
competed, and that was in twentyeighteen, So the book kind of stopped
in twenty seventeen. It took mesix years from finishing the book to actually
get it out into the real world. And that's part of a whole other
(33:34):
rough water story. But so theminimum number of people that I have in
the water is two. So Ihave someone who will push me onto a
wave and someone who will catch meon the other end of it, and
in Hawaii that can be a reallyreally long way. But the number of
(33:57):
people that takes to get me onmy surf for when I fall off and
not that's not if because every serverfalls off the Bethanie Hamilton just put up
this amazing video of her wiping outfantastically during your competition. So everybody gets
falls off and everybody gets back ona board. It takes five or six
people to flip me back onto aboard, people to hold me steady,
(34:22):
people to hold the board steady.The most interesting flip happens is they'll line
me up parallel to the board withmy face to the sky and then someone
will literally be under me and fliplog roll me onto the back up on
the board. So you have totrust, like really super super trust the
(34:45):
people that you're with because they're incharge of your safety and your physicality.
Yeah, you're safety completely. Andit's a team. I mean your life
involve a team. Yeah, contestyou enter, I mean you went to
Hawaii. I'm reading this book inHawaii and you're I'm reading it. How
you actually entered this huge competition inHawaii. I mean you've been you've been
(35:07):
doing this parasurfing in New Jersey,right, and then you get on a
plane, which is a whole notherstory. The plane right, traveling by
playing with the wheelchair and getting Hawaii. How did that go? Not like
I thought it was gonna in somany ways. I ended up traveling with
(35:29):
a manual care of that trip,which meant that I was my independence was
really limited, and so uh thatwas the the personal care team that I
traveled with. I didn't know thosepeople very well, and I made a
decision not to ever do that again, to not travel with people that I
know really, really well. AndI wasn't nearly as strong enough as I
(35:54):
thought I was. I wasn't inin prime surfing condition. I mean,
I was significantly heavier than I shouldhave been, and which means that and
that extra weight limits my own mobilitybecause it makes it harder even for me
(36:15):
to transfer myself and move around.And so it became a point where it
was decided for my safety and forthe safety of everybody else that because I
couldn't get on a board by myselfand it was going to take a lot
(36:35):
a lot of time. I endedup 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 tookthe leap, and you did that with
the miss Wheelchair Kentucky. I meanyou did the whole pageant thing, which
(36:59):
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 specializein helping people with disabilities jump out
of airplanes. So I'm really excitedto do that. I want to go
(37:23):
back to I want to go backto London. I want to go to
Budapeste and see my photos in agallery be hung up at a gallery in
Budapesche. I had some photos upthere 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 usinga micro four thirds camera that has interchangeable
(37:46):
lenses, and I chose that becauseof the weight. I'm really sensitive to
how much things weigh. It hasa 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 wewere standing side by side. If we're
(38:07):
side by side and you're holding acamera 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 thirtyfive millimeter and a great big zoom lens,
and they were doing these big trackingshots, so they're following the bird
(38:29):
as it's flying. And that's hardfor me as a power wheelchair yeah,
to move and hold and hold mycamera and do all that. So I
don't tend to do those type ofphotos. But the photographer didn't say to
me, oh, man, like, you get to hold your camera steady
all the time, right, andit's and it's got a stable place to
(38:50):
live all the time. It justsits on my leg. I do have
a robotic arm attached to my wheelchairnow, 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. SoI used to have a black and white
dark room set up when I wasin my twenties, and I loved it
(39:15):
and I carried it around like itwas, you know, a life reserver,
you know one of those orange lightbests that you have on coast guard
boats. Like, that's how tightlyI 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 thesame creative stuff with software. Wow,
(39:38):
that's amazing. You know, jumpingon 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 fellin love and then I knew that
(40:01):
that wasn't There were there were challengesthere. Yeah, And I ended up
choosing me instead of choosing us becausehe wasn't able to come to grips with
my muscular districty. He was reallystruggling with that. Yeah. And I
(40:22):
had chosen him thinking he was mylast best shot. And when you believe
that, lie, you'll settle foranything. Wow. And he was a
great guy. In fact, westill talk, so you know, he
just wasn't my guy. Does thatmake sense? Yeah? I mean,
you know, some people can't deal. It's hard for them. And you
(40:49):
know, if they can't do andand and they can't yeah, you got
to choose. I think you saidthe 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 firstwheelchair, that's when I chose me.
It turns out that this January,my first love high school boyfriend, resurfaced
(41:15):
and he had been a widower forthree 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 storybecause it's complicated. Yeah, you know,
(41:37):
it's more complicated than thirty five yearsof not talking. Speaking of story,
when did you start writing rough OrdersAnd what was the was it cathartic
for you, what was you know, the process for you emotionally? So
I started writing rough Waters in twentysixteen, and it was actually a completely
(41:59):
different book in its first dress.In its first run, it was a
book of stories, not a bookof the story of me, if that
makes sense. So I told funnystories about my cat bringing in a mouth
and my service dog playing with itand you know, me trying to get
(42:21):
it back out of a house,but not deep stories, and it said
was another editor for a really longtime. And then when I got it
to the groups that I started workingwith last year, they were like,
Okay, there's some stuff here,but it's boy, this is rough and
it needs work. And so wegot me in touch with a developmental editor
(42:43):
who said, you know, where'sthe interiority here? And I said,
I don't, you know, Idon'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.
(43:07):
And so it was cathartic and painfuland about the same time. And right
before I turned my book over tothis new group, I was working with
a business coach and she said,you know, don't I don't need the
(43:28):
details, but if you had traumaticyou know, at least one traumatic event
happened where you decided then that hidingwho you are was safest. And I
said, uh, yeah, thisand this and this and this and this,
and she said, then I canI suggest that you go get trauma
therapy before we start working really deep, dig in deep on this business thing,
(43:53):
because I think you really need tobe seen, and when you let
yourself be seen, it's going tobe a beautiful thing. And so I
took a deep breath and I founda counselor who specializes in I E M
D R. It's yeah, yeah, it's trauma. It's eye movement E
(44:21):
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 itfor PTSD, even out in the military.
And so I was doing trauma therapyat the same time that I was
rewriting my book. Let me tellyou that I would only recommend you do
(44:45):
one or the other, not bothat the same time. Trauma therapy would
send me, you know, Iwould finish my session and I would go
lay in bed and cry for anhour, like tough, really tough stuff,
and then trying to you delved intoall of the you know, how
did it feel? Because I'm alsoa breast cancer survivor, I know,
(45:08):
you know, how did it feelto 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
(45:29):
actually knew though that I needed toget back to my fan family. So
and actually going into that surgery,I told my doctor, look, dude,
I have a date with a surfboardin seven weeks, and you have
to help me make that happen becauseI knew that the water was my healing
place. I have to tell you, Heather, your breast cancer diagnosis struck
(45:50):
a nerve with me because you hadsomething called the Filoades tumor, which I
happened to know about because my bestfriend had a Flodi's tumor. Unfortunately,
she was not as lucky as youwere, and she passed because her cancer
was discovered in an advanced stage becauseshe didn't go get she did. She
ignored it and Filodi's tumors. You'revery lucky. You're very You're a very
(46:13):
lucky woman, and I hope thatyou know, you continue to stay healthy
in that area. It was justa lot. You know, I'm reading
this book and there were a lotof 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 Iread Felodi's timmer, I'm like, oh,
yeah, that's that's that's rare,dude, that's rare. Rare.
(46:36):
You deal, You're dealing with alot of rare things. You were picked
to be super special. I guessyou 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
(46:59):
the doctors when I run this,run this rare one more, one more
point down the rail, and thedoctors have said to me, oh,
by the way, we think thatthe mustard just me that you have might
be secondary to something we don't knowhow to find. But we don't think
this is actually the primary cause ofyour issues. We think it might be
(47:21):
secondary. And I have to tellyou that I just kind of broke into
one of those hysterical laughs. It'slike, really, this thing that's wiping
out my hips and my shoulders andmy hands and my feet and and is
you know that might not be mybig thing? Wow? Wow. So
here's what I want to ask youbecause we're going to have to wrap Heather,
(47:44):
knowing all of this and you've you'velived an astoundingly amazing life. You've
achieved more than many people who youknow have the use of their legs and
arms and their full bodies. Socongratulations on that. Well, do you
have a mantra or a quote thatyou live by that motivates you every day?
(48:04):
You know? I have a couple. M One is find your team.
Yeah right, you know, lifeis a team sport and people are
going to come and go from yourteam, but the really good ones stay
and they're the ones who will snatchyou up and roll you over so that
your faith up to you know thatyour face is out of the water.
(48:27):
I'm going to use surfing metaphors.Yeah, they keep you afloat. They
keep you afloat, and they keepyour 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. Andthe other thing that I'm really working
on and my monitor is self careis good. Yeah that's mine too,
(48:52):
because I neglected my self care.Well, Heather, we've got to we've
got to wrap up. It's justbeen a great conversation. I could talk
to you forever. I want tojust make sure that my listeners know again
that your name is Heather C.Markham and your your company is making Ways
(49:12):
for Good. The book is RoughWaters from Surviving to Thriving with Progressive Muscular
Dystrophee and your website is Heatherseemarkham dotcom. Correct, Yes, all right,
listen. I wish you smooth watersahead in your life and love,
and thank you for sharing your inspiringstory. I hope it will help inspire
(49:37):
others, particularly those who are receivingdiagnoses that are knocking them off their feet.
You know it's a choice you makeevery day. That's yeah, I
make that choice, Dan Tall,no matter where you sit. Thank you
very much for joining me and you'vebeen listening to Fearless Fabulous. You I'm
Melanie Young. You know that lifewill develop lots of detours, but you
(50:01):
know you have the ability to navigatethem if you choose. And life is
about making choices to take care ofyourself and live on your terms. So
stay well, stay fearless and fabulous, and please follow me at Melanie Fabulous
on Instagram. Thank you
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