October 20, 2023 • 51 mins
Despite the disability or condition, the path from denial to acceptance is anything but linear and smooth. We all have our own journeys to becoming the person we want to be. Sometimes that journey requires us to travel alone and other times we have are fortunate enough to find the support and guidance we need.
Becky Etchberger is a successful TV producer for many shows such as American Idol, The Voice & Last Week Tonight with John Oliver. She is also navigating the ups and downs of life, love, and disability due to CMT. In this episode, Becky reveals how she went from hiding her symptoms from dates and coworkers to embracing CMT with a life-changing surgery and all of its powerful lessons.
- Follow Becky on Instagram
- Read Becky’s Post on TREND-ABLE
- Watch Becky’s Mini Documentary, Date-ABLE
- Learn About CMT Surgery with HNF
- Book an EmBRACE It Workshop
- Looking for more great tips, hacks, and blog posts? Visit: Trend-Able.com
- Find more on Charcot-Marie-Tooth (CMT) and patient resources at: HNF-cure.org
- Follow us on IG! @embraceit_podcast | @trend.able | @cmtwegotthis
Please leave us a review and help others find us!
Hosted by Lainie Ishbia and Estela Lugo.
Embrace It is produced by Launchpad 516 Studios.
For sponsorships and media inquiries, drop an email to: embraceit@lp516.com
Subscribe to Embrace It with Lainie and Estela on Apple Podcasts and get notified of new episodes! https://podcasts.apple.com/us/podcast/embrace-it-with-lainie-estela-smashing-disability-stigmas/id1468364898
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Welcome to the Embrace it series, where women
with all types of disabilitiescan be real, resourceful and
stylish.
With each episode, you'll walkor roll away with everyday tips,
life hacks and success storiesfrom community leaders and
influencers.
So take off your leg braces andstay a while with Lainey and
Estella.
Speaker 3 (00:26):
Hi, I'm Lainey and I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Speaker 2 (00:37):
That's as many as MS.
We believe disabilities shouldnever get in the way of looking
or feeling good.
Both of us wear leg braces andhave learned through our own
personal journeys to embrace itBrought to you by Launchpad 516
Studios.
Speaker 3 (00:52):
each episode is designed to challenge your own
stigmas and beliefs arounddisability.
We want our listeners to getthe most value for their time
spent with us, so we interviewsome of the most empowering
disability badasses in the world.
Through storytelling, personalexperiences and tips, we're all
reminded of our own strengthsand endless potential.
Speaker 2 (01:09):
For more information and exclusive resources, check
out our websites attrend-ablecom and hnf-curorg,
and don't forget to hit thesubscribe button for future
episodes and special promos.
Hi everyone, I want to well,estella, and I want to welcome
(01:33):
you to another episode ofEmbrace it, and today.
I know we start off every timesaying we have a special guest,
but this one is special to bothEstella and I in a huge way, and
I think many of you who listenhere and we know we're all about
you know all different types ofdisabilities and having
influencers and people who aredoing amazing things with all
(01:56):
different types.
But today we have, I guess,with us who has chakramary tooth
disorder, like Estella and I do, and she's super cool and
awesome and has an amazing storyto share and you know she's
also sort of like in theHollywood world.
Well, she is in the Hollywoodworld and has done really cool
things which I'm going to lether tell you all about.
(02:18):
I want to welcome BeckyEdgeberger to Embrace it.
Hi, becky, hi.
Speaker 4 (02:25):
Thank you guys so much for having me.
It's such an honor.
It has been a journey bothindividually, but also with you
two.
I think from the moment I metyou both, my own acceptance has
gone up and down like a bit of aroller coaster.
So it's nice to finally be onthe other side and talk openly
about everything with both ofyou.
Speaker 2 (02:43):
When you and I first met Becky just to give people a
little update I launchedTrendable.
Now it's been almost six years.
Can you believe it?
I mean crazy.
So six years ago I put thiswebsite out to the world, had no
idea what the response would be, and one of the first emails
you know the month I launched itwas from you and like in it it
(03:07):
was basically like I have CMT,my aunt saw your website and
passed it on to me.
I'm kind of in denial, but I'dlove to do something.
I do a lot of dating or tryingto date in the world of you know
20 something people.
At the time you were in your20s, right, and you were in the
Hollywood world doing American.
(03:27):
Were you doing American?
I think it was American Idol,or you have just finished
American Idol.
Speaker 4 (03:32):
And I was.
Yeah, I just finished AmericanIdol and I was working at the
Voice at the time, so my kidsstarted jumping up and down.
Speaker 2 (03:38):
They're like it was like as if you were like one of
the main stars of one of thoseshows.
They were like super excitedand you wrote for me you know
one of the best like blogs wehave, which was on your
experience with dating with CMT,and at the time you were like
it's okay to put my name on it.
(03:59):
I'm trying to be more open andaccepting and I'm learning about
CMT and what I have.
My mom really didn't talk aboutit much, but you know this is
my attempt to like give back andfast forward.
I don't know, I think it wasmaybe a year later, two years
later, I don't know.
Speaker 4 (04:19):
It was probably two to three years later, I was
already living in New York,you're like Lainey, I'm dating
and all these guys.
Speaker 2 (04:28):
When they Google me, not only do they see American
Idol and the Voice and all thestuff I do, but then they see
this article that says you know,living with CMT and dating, and
I don't want them to see thatbefore I tell them or feel like
I want to tell them.
So can you remove my name fromthe internet?
How do I do that?
And then I was like, oh my God,okay, and so fast forward and
(04:57):
we're going to get to this.
Just last week, becky wrote anamazing post about her
experience and her life andwe're going to link to it and
about her experience havingsurgery recently for CMT with
CMT, and you promised me in yourbeginning part I would not make
(05:18):
you or ask you to take my nameoff of this.
Speaker 4 (05:22):
But going back?
No, going back, that's right.
No, you've got to add to that.
You've retold that perfectly.
And I think what I experiencedwas the difference between where
I wanted to be and where Iactually was.
And I think in my mind Ithought, of course, what a
wonderful opportunity.
I think when I saw your website, it was sort of this idea that
(05:46):
I was like I mean, I can't say Ithought it, but it felt like,
oh, what a I relate to thismoment, this woman that has CMT,
this is a living with a reallife, who wants to dress cute
and not necessarily sacrificefashion but also live her life,
both socially and with therelationship, just confidently,
(06:06):
and everything we would see whenyou Google CMT.
It's like I can't identify withthose women.
And I think when I saw yourwebsite, I immediately
identified with you and thought,yes, this, this is so important
.
But then when I, when we didpost it and then it was put into
practice, and then Iexperienced the reality of men
telling me, which soundsridiculous, it sounds a bit vain
(06:27):
, I guess, to assume.
I really don't think all menGoogle your name before first
date, but it did happen morethan once, so that was enough to
scare.
Can I swear?
Okay, scare the shit out of me.
And I think my insecurity hadnot caught up to where I was
hoping to be mentally, and so Iwas still.
My gut reaction was just, canwe bury this somewhere?
I don't want this out therebecause I'd rather tell them
(06:50):
myself, you know, and I justthink I needed to get there on
my own.
But yes, coming around to I waslike you're going to think I'm
crazy.
Speaker 2 (06:58):
But let me just say for any teenagers listening
guess what?
When you put your name tosomething and your face on the
internet, you can remove names,but it's forever there.
They will still link to youbecause your name was attached
at one time.
So you can never completelyremove someone from anything you
(07:22):
post.
So please don't take a picturesand put it on the internet ever
.
A little public service messagefor those people.
Speaker 4 (07:30):
Good luck then to learn.
But yeah, I think at thebeginning you were like okay,
well, this sounds like a greatidea.
But just so you know, I don'tthink I can just post something
with you know, an anonymousauthor, I don't know.
I've thought about it long andhard and I am ready.
I'm prepared, so attach away.
Speaker 2 (07:46):
Yeah.
Speaker 3 (07:46):
And you know, becky, and I too, I was there at that
first meeting where I was alsothe first time I met Lani in
person.
So both of you, that night weconnected in New York City and
it was just I just rememberfeeling so energized to be at a
table with women my age talkingabout CMT.
That was never, that had neverhappened, other than you know me
(08:10):
and my sister in my entire life.
So I just remember that being areally, you know, special day.
And then fast forward.
You know, in addition to thearticle that you were doing with
Lani, we were excited to bringyou in on H&F side too and see
if we could merge your, you know, writing about dating with the
(08:32):
CMT world and share a little bitin a video format, kind of a
mini documentary that we puttogether for CMT called dateable
and just you know, a quicklittle skit about a woman like
yourself dating with disabilityout there and what that was like
(08:52):
.
Maybe you could give us like alittle bit of a teaser, because
we're going to put the film inthe show notes, but tell us a
little bit about what we endedup doing for that.
Speaker 4 (09:00):
Yeah, that's right, gosh, that was right after I
moved to New York, so it wassuch a whirlwind time and when I
look back on that, I'm so proudthat we managed to get that
together and put it out thereand attach it to that premiere
of that documentary in time andimpact, even from the people
that saw it there, which waswonderful.
But I think it was really justtrying to narrate the thought
(09:25):
process that I tend to gothrough before First States and
learning that perhaps I put somuch pressure or emphasis on the
CMT factor while notnecessarily realizing that
everybody sort of has aninsecurity or something about
them that they might immediatelysort of have pop in their mind
as soon as they're approaching abrand new person and trying to
(09:46):
put themselves out there like,oh gosh, they're going to notice
.
I think we went with, we decidednot to go to disabilities, we
decided to go with a guy thathas a bald spot that's not
necessarily visible in hisphotos or whatever, but what
that feeling is like for thatperson too.
Meanwhile, the whole time I'mdriving myself absolutely insane
trying to minimize my walk andif it does come up, how do I
(10:08):
bring it up and how do Iapproach it what do I wear and
where do we sit, and all of thatand then cut to at the very end
, revealing his own internaldialogue, which was like God, I
hope she's cute, I hope shedoesn't notice my bald spot, and
it's like, I think, a lot oftimes when you just come down to
that, like no one's reallynecessarily paying attention to
the things that we tend toobsess about.
Speaker 3 (10:29):
Yeah, I mean it was powerful and we definitely
encourage everybody to checkthat out and you're right, it
was.
What was really intriguing forme was that it was that internal
dialogue, that we think we'rethe only one with that internal
dialogue but really everybody'swalking around the earth with
that.
You wrote in your article withLaini a lot about your personal
(10:52):
journey, accepting CMT and likecoming out with CMT.
What do you think were parts ofyour childhood that may have
because you talk about?
You know your mother'srelationship to her CMT and how
that affected you and I thinkthat, again, that's so important
to look at our family dynamicsaround disability and how they
(11:14):
affect us and create thoseinternal voices as we become
adults.
Speaker 4 (11:19):
Right, and I think that was something important to
me with writing the article,because not to jump too far
ahead, but I think initiallybringing the idea to Lenny of
like I want to tell the story ofmy surgery journey because it
was so impactful, and it wasn'tto tell it to be like, oh, look
at all this big stuff I wentthrough, because I didn't feel
that way.
I felt like this was such anincredible opportunity, an
(11:41):
amazing ride, and I wanted tosort of put it out there, to be
like you don't be intimidated bythis process, because it was
actually.
I found it to be quite lovelyand I learned so much about
myself and surprised myself in alot of ways.
But to sit down and start atthe surgery point felt like it's
starting halfway through amovie and it was important to me
and I began writing thatbackstory about my mother and I
and communication and and we'relack of it growing up about CMT,
(12:05):
because that was how I got tothat place.
And so I was like, even if wedon't end up including this in
the article, it felt that Ineeded to write that out for
myself first to then get to thatmental space where I was when I
finally pursued the surgeryaspect of it and I think that's
also how I got to likecontextualizing my mother's
(12:25):
period in her life when shestarted showing symptoms in her
late teens, early twenties, andwhat that was like for her,
because it was so easy for mewhen my before I had CMT or
before I had symptoms of it, orwhen they were still mild, to
judge her for that or to becritical of it or to blame her.
And I think when you take astep back you realize, oh,
there's so much more to it.
(12:46):
The story is not that simple andreally it had to do with the
time period in which she grew up, the communication style of the
family, the fact that her dad,who had it, wasn't even alive
beyond, you know, 18 years old,so there was no sort of plan in
place of this is how we're goingto talk about it.
No one showed her how to talkto kids about it, so like, how
(13:07):
would you know how to thendiscuss this with your own kids
when they're going throughsimilar experiences?
And I think part of what Ilearned to was those early years
that were so difficultemotionally and hard for me to
understand that I was still awhole person and also still cool
and still, you know it could beattractive regardless of this
(13:29):
thing.
It was I think I experienced itthe same way that she probably
did which was like, oh no, thismakes me less than, or this
makes me below average.
We were so active and now I'velost that.
How well, if I can't see myselfas whole, how are other people
going to see myself as whole?
So I started noticing that I wastaking a very similar path and
(13:51):
I, I guess I just I don't wantto compare it to her because I
think she's had she's through meand through me being so open
about it eventually has sort offirst forced the conversation
there as well, which has beenwonderful to see, because I
think I realized I don't want tonecessarily have this battle my
whole life of worrying aboutthis as more, of seeing it as
(14:13):
more of a burden and not beingable to talk about it openly
because I can.
I see now how that not isn'tnecessarily health, healthy both
for you and your relationships,and that was the other thing I
put.
It definitely put up a wallbetween me and I would say I
would say men and dating,because my friends of course
were, and family except me forwho I am, and a lot of times
they would listen and identifywith what I was, tried to
(14:37):
identify with what I was goingthrough.
But at the same time I think itwas harder for them because
they're like, well, I don't, butyou're Becky, so I see you as
who you are and you're wonderful.
It's not.
I don't see CMT ICU, you know.
So they would try so hard toexplain to me that like the same
thing could happen with men ofthe work, with people of the
opposite sex, but I could notfor the longest time see that.
And maybe that was physical,maybe part of that was, you know
(15:00):
, my mother was a cheerleaderand I was a dancer to
cheerleader and we focus so muchon like her physical selves
that we kind of forget oh,there's this whole other aspect
to human beings that goes beyondthe physical.
Speaker 2 (15:11):
Yeah, and my story you know, even though I love
that.
Estella said that when she metyou and I for the first time.
It's like she was like people,our age, but literally I'm 10
years older than Estella andprobably I don't know 20 years
older than you or something.
So but my experience wassimilar because obviously you
grew up like I did, where therewasn't internet and, you know,
(15:33):
there weren't people that wecould see, that looked like us,
that your mom didn't have people.
My mom, who you know, you guys,most of you know, has CMT and is
now deceased.
She died literally three weeksafter I launched the website,
but she wasn't embarrassed, shejust didn't talk about it ever.
(15:53):
She just made it because mymom's disabilities were very
visible.
She had hands that were verymuch clenched in a fist.
She had trouble getting in andout of a chair, pulling up hands
, all of that stuff.
So it wasn't like invisible,like my disabilities mostly are.
So she was constantlyencountering people who were
(16:15):
like what's wrong with you?
What's wrong with you?
And my mom was just.
She taught me indirectly likejust blow it off, you don't need
to go into detail, like just,it is what it is Like.
So I lied all the time I'd belike I was in a skiing accident
and I was in this whatever.
Because it was so much easierand because of the stigma that I
(16:37):
know exists with you know, whenyou say you have something.
So you know, when you wrote thatarticle about dating, I at that
time I had I was married toHoward, but I had a short window
of time when I was divorced andin the dating world again with
leg braces for the first time,because when I was originally
(16:59):
married to my kid's dad I didnot wear leg braces.
And I remember that grippingspear of like this guy seeing
the leg braces, which meant likeI'm never going to get into
mimicking blood and because thenthey'll never see him right.
So I remember that feeling oflike oh, what if he touches my
leg, like lower than you know myknee, like then he'll only see
(17:20):
him.
So, people who are listening,you know we were there, like I
was there, becky was there, youwere, you know, and it felt like
it's it's so much better.
I don't know about you, becky,but like my life in general is
so much better, just beingdirect and authentic and it's
it's a saying of.
I don't know if this is asaying or if it's just something
(17:42):
I say, which is probably true,which is like, you know, the
things you focus on, like whenyou focus on your CMT and
whatever that's what people willfocus on.
But if you don't make it anissue and a bad way, then
chances are the guy, the girl,whoever you're seeing, isn't
going to make it a big dealeither.
You know that's.
Speaker 4 (18:01):
That's that's perfectly said and I identify
with that so much.
And that was something that oneof the many things my therapist
worked on with me was wasexactly what you just said she
was.
She helped me a lot tounderstand that, because at the
time when I started seeing herand my motivation was twofold it
was CMT and like my father hadjust died.
So it was like enough, enoughis enough.
(18:23):
I guess it's finally time tolisten to my friends and like,
see somebody and and Iunderstand now the benefits and
it was slow, it wasn't immediate, it's not like one session and
you're cured.
It takes persistence.
But she, it was exactly thatthat we tried to focus on.
It was like how do you, as longas you see it as this big thing
and it's the first thing aboutyou when you walk in the door,
(18:43):
or that's what you perceive thatother people think about you?
Then then the other people pickup on that energy, whether it's
friends, family or potentialrelationships.
And it took me a long time tobreak through that and it wasn't
necessarily a linearprogression.
It was like some, some weeks orsome dates were better and then
(19:03):
I would slip back down and youwould continually work on it.
But eventually it was startedthis sort of steady decline.
But you're absolutely right, itwas like when I was finally
able to get there and shift myperspective on it a little bit,
and not that it's like okay, Idon't have it, I'm going to
ignore it or lie about it whichI understand, that too, I've
done that in the past as wellbut kind of find a different way
to frame it.
(19:24):
And I think once I was able todo that for myself and then work
that into conversations when itwould come up it's two
sentences max If I want it to bein.
She opened.
My therapist also taught melike I can drive that
conversation.
It doesn't have.
I don't owe anybody anyinformation.
I can share as much or as littleas I want to about myself, but
I can also say it without somany words of going into, like
you know, a health, like adoctor exam on a first date.
(19:45):
You don't have to do thateither.
But I overall, once I'veshifted that perspective, I do
feel so much lighter and like mylife is so much better, because
that's not the forefront of myfocus with everything it's.
It's amazing thing how muchmore honestly fulfilling my life
is, but also how much more roomthere is for other stuff that
(20:06):
actually matters.
It's like that doesn't matterin so much as it's.
It's not going to go away if I,no matter how hard I think
about it or how much time energyI waste on it.
So maybe it would be best totry to minimize that a little
bit and focus my energyelsewhere.
Speaker 2 (20:22):
Yeah, yeah, you really did.
The 2.0 version of coming outof denial and acceptance, and I
would say the 3.0 version, whichmaybe this new post that you
wrote will help you to get there, is not only not making your
disability be a big deal andusing it maybe as an excuse to
(20:43):
not date, but then how aboutthat?
It gives you strengths thatothers might not have.
That you see, that guy thatyou're meeting and you're like,
oh, I have a disability and youframe it, which is true that
this makes me like a catch,because I'm literally going to
be the person who's going to bemore sensitive, more aware when
(21:07):
you dude get old, like I know,because I get it, like all of
that.
But your blog post, gettingback to that which is, was
amazing, your most recent one,which is, like as Estella said,
all about your journey, startingwith, you know, the messages
you got growing up in yourfamily and then to you today.
(21:30):
You know, kind of give us, ifyou don't mind, like I guess,
the abbreviated version of whathappened, absolutely.
Speaker 4 (21:38):
It's.
It is funny that it starts outwith shoes Like you look like
wow, I thought everything was sohard.
It was like I can't wear myfour inch heels anymore.
I had to downgrade to three.
It's like now I have noplatforms of any kind in my
closet.
But I say that with a smile onmy face because I don't care
anymore and that, I guess, is awonderful feeling to see how far
(22:01):
you've come and I, yeah, backthen it started because I,
because it was hard.
I was definitely not a placewhere it's open to talking about
it.
So the first concern was likeoh gosh, yeah, what do I?
I like to be stylish, I like tolook nice.
Plus, I'm only five three.
I'm short.
I'm like you know, puttingmyself on still so I'm.
So I'm taller and had alwayshad big calves, to the point
(22:23):
where I used to think my calveswere too big.
It was hilarious, the thingsthat we focus on.
But I think I guess the next bighurdle really was dating,
because I was also newly singleat that time.
So I think it was also tryingto navigate, you know, dating
apps for the first time andactually being that person as an
adult that goes out on dateswith strangers and puts yourself
(22:47):
out there repeatedly.
I had never done that before inmy life.
Like college, I could care lessand then dated two guys for
four years back to back anddidn't deal with this.
So I think it was coming toterms with that, which is
probably why that was at theforefront of my mind when I saw
your website for the first time,Laney, and wanted to be a part
of it.
It was how do I work this intodating?
(23:08):
And I think what I had torealize the hard way was that I
was putting the car before thehorse and I had to have that
journey on my own before.
You know, it's hard to saywithout sounding a bit cliche,
but it was true.
I had so far to go on my ownbefore I was ever ready remotely
(23:29):
ready to let somebody else comeclose, when I wasn't even able
to kind of see that part ofmyself yet.
It was one thing to talk aboutshoes, but it was another thing
entirely to like accept thatthis is here to stay.
It's probably going to getworse.
Tripping increases your sort oflife quality.
You have to shift some of theactivities that you used to do
and, yes, with work.
It's like my job is on my feet,not necessarily every day, but
(23:52):
such a big part of it is runningaround a set being in
production and it doesn't slowdown for anyone.
So it's like how do I sort ofmerge the two and not just talk
about it on dates anymore?
But it became like how do Imaybe comfortably talk about
this at work?
And because of the nature of myjob I work directly on
production, so I do tend toswitch show every two years,
(24:14):
three years.
You know I've had some goodruns with five years, including
my current show.
But it's like every time whenthe CMT would get a little bit
worse, it was like, hey, maybe Ido have to address this, but
you actually don't.
It's like I guess it otherpeople don't care, Like at last
week tonight, no one ever askedme for the first year and a half
that I was there about how Iwalk or am I okay on set.
You know, nobody babied me.
It was sort of like it's on myterms.
(24:35):
But when it got to a pointwhere it was like I wouldn't
mind being a little bit vocalabout it to say I, if I'm going
to be on set all day, I need achair, I need something to at
least lean on in between.
I need to go a little bitslower here.
I need somebody to go do thisother thing.
I was very aware of not wantingto put two.
I'm certainly stubborn in thatway, Like I want to do
everything myself, but it doesbecome empowering to also ask
(24:59):
people for help when you need it, and I think the part about
learning how to communicateeffectively, both in with
potential dates, but also atwork and with that with anybody
that might not understandexactly what it is, became a
huge tool for me.
That helped to my success thereas well, because the same went
at work.
(25:19):
The more I was able to sort andnot with it being this big
health conversation.
I'm just like oh yeah, I have aneurological disorder.
It's a bit difficult for me.
The muscles in my hands andfeet are weak and balancing is
hard, which I find myself alwaysexplaining the balance thing,
because you don't see it.
You see somebody, I guess, butyou don't see that part, but
it's like on set.
That's something that'sprobably the hardest for me, and
(25:41):
the more I would have aboutthat, the more receptive people
are and so willing to help you,and I think they like to be
loving on that too.
And then it is that relief like, okay, great, you know, now we
can move on.
I guess that was.
I guess the next step wasdealing with it at work.
And then I think, throughoutthe whole time just continuing
(26:03):
therapy and trying to hold upthat mirror and get a little bit
more comfortable in my own skin.
I think New York helped me inthat way too, because I realized
everybody has so much going onin their own lives that no one
cares, no one's looking at mewalking down the street.
They all have plenty going on,and I just think I feel a lot
(26:24):
like myself in this city as well, and that also added to my
confidence.
And so it all kind of workedtogether.
And now I was still I don'twant to say stubborn, but I
think the way I framed it in thearticle was that I was, while I
had made some mental progress,I did still at times struggle to
(26:45):
accept that AFOs were the onlyoption, that's it, nothing else,
and you'll walk like thisforever.
So that's how I ended upcontinuing the research and
finding Dr Pfeffer online andimmediately recalled meeting him
years ago when I was nowherenear considering surgery and
kind of went down that rabbithole and got obsessed with that,
(27:07):
Not necessarily at that pointfor trying to achieve perfection
physically.
I think I had finally gotten toa point where it was less about
that and more about if I couldimprove my quality of life if I
could walk just a little biteasier and make my life on set a
little bit easier.
I walk so much in the city Likethat felt like reason enough.
(27:29):
Like at that point I'm like I'mnot trying to achieve like go
back.
I understand that I'm not goingto go back to my pre-CMT body,
but even if we get anincremental improvement, that
seemed worth it to me.
But I do think that emotionalpart was really necessary to get
to before going that route.
So I do think you have to be abit emotionally strong to go
(27:50):
through that process and beready for it.
You know.
Speaker 3 (27:55):
We'll be right back.
Speaker 6 (28:06):
This is George, fred and Jason, the co-leaders of
Speak, interrupting to say thatwe hope you're enjoying this
episode, but please make sure tocheck out our new show, the
Speak Podcast, another greatshow produced by Launchpad 516
Studios.
New episodes available everyweek on all of your favorite
podcast platforms.
Speaker 5 (28:25):
Each Speak Talk is about six to ten minutes in
length, and the talks are givenin storytelling formats.
There are three key moments ineach Speak Talk the moment of
truth, the moment oftransformation and the moment of
impact.
We host pop-up events all overthe world, and now we're
bringing our talks to yourdevice.
Speaker 6 (28:46):
Join us on the Speak Podcast as our speakers step
onto the stage and into thespotlight with impactful ideas
and stories.
Speaker 1 (28:55):
We'll let you get back to the show you were
listening to another greatpodcast from Launchpad 516
Studios.
Speaker 3 (29:05):
You're tuning in to embrace it with Laini Anastella,
brought to you by Launchpad 516Studios.
I think there's a lot ofexpectations there, especially
with surgery, and you have to berealistic to some degree
because, like you said, it's nota cure by any means, but it is
meant to improve your quality oflife and your function.
(29:27):
I remember when I had mysurgery, my surgeon promised me
that I would never have to wearleg braces again At the age of
12, that was the most importantthing in the world to me.
Just to fit in, I took his wordas absolute truth.
Within a year I was wearingthem again because I just
realized I am.
(29:48):
I feel like I'm walking inquicksand.
Even after the surgery I wasway better, my feet were
straight, but I was just notfunctioning at the way I was.
For you to come to that placebecause I think, whether it's
CMT or not, a lot of times thesurgery or major
life-interrupting treatment is abig decision we have to take a
(30:09):
leap of faith that that is goingto be something on the other
side, even though it's going tobe a really shitty situation for
a while, that that's going tobe what's best for us and that
the risk is going to be worth itand that we need to come to a
place where we need to put ourlife on hold, as I'm sure you
had to experience putting yourcareer such a busy and
(30:32):
time-consuming and anenergy-consuming career on hold,
to put yourself first.
Can you tell us a little bitabout when you made that
decision and you said it wassuch a positive experience for
you in so many ways, I think?
Speaker 4 (30:46):
also what helped, because it does require so much
time away and away from work.
It was important that I wasable to even have those
conversations.
Before you bring up hey, by theway, I have this where do you
even begin that conversationwith your boss if they don't
know anything about it?
So I think, getting to thepoint where I was like I feel
comfortable and open enough tobe able to talk to them about
(31:08):
this the people that I need tothen I explained it and I think
only to two or three people atwork all of my bosses, and they
couldn't have been moresupportive and they were all
like you can give as much or aslittle info as you want, don't
feel that you have to, but ifyou would like to share, I would
love to learn.
I loved that because it made me.
It was like they were taking agenuine interest in what I was,
(31:31):
not just the dates of thesurgery, but the why's and how
it made me feel and what I wasgoing through, and so I think
all of that helped a lot.
But I will say I got I guessperhaps lucky is not the right
word, because it was a pandemicand I realized that a lot of
awful things happened duringthat time, but when it came to
removing myself from day to dayroutine, I was working remotely
(31:54):
already anyways, because it was2020 and we typically have about
a two month hiatus over winter.
So in my mind I was thinking,well, I could do it over winter
and potentially that bleeds intothe beginning of next season,
but we will most likely still beremote anyways.
So hopefully it's okay.
(32:14):
And when I brought it up, theresponse was well, you could
tell.
And I was like I'll wait untilafter a bit.
We did this huge finale shootand it was really intense and
crazy and I was like I'll waituntil everything's done and
wrapped up and schedule thesurgery for, like immediately
after that.
And they were like you couldtell us that there was only one
time of year that they could dothis surgery and it was at the
busiest time and it would stillbe okay because your health
(32:37):
comes first and that was theanswer.
So it sealed the deal and madethe whole process, I guess,
going into it easy, because itwasn't.
I wasn't feeling stressed oranxious when it came to what I
was missing.
I'm also single.
I don't have any kids or family, so I understand that.
That's something else thatpeople have to consider.
Speaker 2 (32:54):
I know people are listening and we are not.
Estella and I, norbecky, noneof us are doctors, none of us
are CMT medically trained.
We might know a lot but we arenot.
And also, I wanna also say thaton hereditary neuropathy, hnf's
website, which we're gonna putin the notes, they have a whole
(33:15):
section on surgery and links tothe surgeon so you can get your
own virtual assessment whetheror not you'd be a candidate,
completely free.
But, becky, what was it forthose who are listening, who
aren't gonna go to HNF andaren't gonna take time, is there
like, how did you know you'd bea candidate?
Like what was that In a quickthing, without being a doctor?
(33:37):
People who are listening, Iknow I wouldn't be a candidate.
I wear two leg braces.
I've worn them for many years.
There's no helping me to haveby having surgery, like there's
nothing that surgery wouldbenefit me personally, like his
surgery, but you were different,yeah no, that's a great
question.
Speaker 4 (33:55):
Honestly, I did not know if I was a candidate or not
.
I just in my head was, like Iam going to do this, like I will
do whatever it takes to get DrPepper to take a scalpel to my
feet because he has magic hands.
I didn't do anything.
I also, look, I did have tomanage my own expectations in
that, which he is pretty clearwith every interview.
(34:16):
I think he's done, andeverything you'll find on the
internet about him is that noteverybody is a candidate, like
you said.
He will even tell you somepeople are better suited for
braces and will be helped morewith braces.
Some people you know I thinkthe most obvious ones are people
that tend to walk on theoutsides of the feet.
He can help flatten that out,even if you do still need braces
(34:37):
, so that one becomes mostobvious.
Now the other thing he looksfor is having some strength and
other tendons in your foot.
So some may be weak, but youmay have some others that still
have a lot of strength and he'slooking for those other strong
tendons that he couldpotentially move to the top of
your foot to then help it liftup, to help with foot drop.
Speaker 3 (34:58):
So I think that's Because your surgery was a
tendon transfer, which isanother common CMT.
But then of course there arereconstructive bone realignment
surgeries.
So that the we're talking, youneeded to be at a certain level
for the tendon transfer.
Speaker 4 (35:15):
Exactly and we actually did both of those.
So everybody that's the otherthing.
I guess it's a hard before youhave a consultation or if you're
out of state or out of thecountry.
They have sort of a short listof videos to take of your foot
feet so they can get an idea ofhow they move.
And we did do a fullreconstruction as well because
my foot was not at 90 degrees,it was well below the 90 degree
(35:39):
so he had to flatten it out inorder for the tendon to even
work.
But I think the normal, likesome of the regular tendons that
he's used to seeing, are ifyour foot can move strong either
inward or outward.
There's like a tendon that somepeople with CMT may not have
the ability to lift the foot,but if they can return, like
(35:59):
still can fully turn it to theleft, fully turn to the right,
those are like the top choices,I guess I would say for him.
And then he's also, I thinkover the last five, six years,
started doing the toe tendons aswell.
Some people still have strengthin their toes and the ability
to curl and flex them, and sothose will even help or
sometimes double up and addextra reinforcement.
(36:21):
I didn't have any of those.
All of the strength in thosetendons that he would look for
first were gone and that's why Ihad to be really persistent and
some things they pushy, but Iwas just like in my mind.
I was like he's my last hopefor it.
You know not braces, right,braces are in the other world
and I still have A-fills andsometimes on set I still I wear
(36:41):
them too because it helps myfeet still get fatigued and at
the end of the day they're notgonna lift as well as they were
at the beginning of the day.
But he eventually found thatthe when I pushed the ball of my
foot down, so basically theball, like just under the big
toe, still had a lot of strengthin it and it was not something
that he was doing regularly.
It was a very rare surgery forhim and I think that's why he
(37:03):
had to wait on it a little bitand wanted me to try the braces
first, to think on it, becausehe's also very careful.
He won't necessarily let thepatient decide oh, I'm a
candidate for surgery, so you'regonna do because I'm Becky and
I'm, you know, bossy, and gonnacome in and be like look, I'm
determined, you can do this forme.
Whatever it is, it'll help.
He's like not so fast, like Iwill not operate on people's
(37:24):
feet, that I know I will nothelp, or that won't come out on
the other side with animprovement, but you know, fast
forward.
I went back to him again andagain and eventually it's not
that he caved because I waspushy, I joke but he did assign
me braces and said you know youhave to try it.
I'm not gonna put a timeline onit, but you have to give it a
(37:46):
try.
And if it's still not right foryou and you're still wanting to
, you think you wanna pursue thesurgery.
Knowing you're kind of right onthe line of where I would draw
the candidacy for patients forsurgery, then I'll leave that
choice up to you.
And that was huge because I did.
I think I gave it about threemonths, but then I was like,
yeah, no, let's do it.
But he told me after surgeryI'm so glad that you were
(38:11):
persistent with me and that wedid go through with it, because
your surgery went so well thatnow I'm confident to do that on
other people and other patients.
And he performed anothersurgery, I think a month after
mine, for this woman who flewdown from Canada and did the
exact same surgery on her thathe did for me.
Speaker 3 (38:28):
Wow, that's amazing.
Speaker 2 (38:29):
So I also want to say , though, like before when I
said I'm not a candidate, thebig reason I wouldn't be a
candidate personally is becauseback when I was a young kid, the
protocol because I didn't knowa lot about CMT was, even though
I didn't fall yet, even thoughI didn't break ankles, they
fused your feet back then, orsome doctors.
(38:52):
So both of my ankles arecompletely fused.
I have no movement up and downor side by side, so that's why I
personally wouldn't be acandidate and also, for those
listening, that's also why someshoes work for me and don't work
for some of you that I post,because I don't have movement in
my ankle, so I don't worryabout falling down from a or
(39:14):
rolling my ankles on a higherplatform type shoe.
So that's that.
But, becky, your story isincredible and so interesting
and really you're his likebiggest fan.
I see all over your.
I'm gonna have like you shouldbe paying you to.
I'm a hero.
Speaker 3 (39:32):
Yeah, yeah.
You also mentioned that therecovery period after your
surgery was positive in a lot ofways and life changing.
Can you speak to why that wasand what you kind of discovered
more about your truth, oruncovered, during that time?
Speaker 4 (39:49):
And I guess that that's another way in which I
was lucky with this processbecause I used to live in LA for
a long time.
So for me, during the pandemic,to have to recover there was
probably easier than it is forall people.
So I don't wanna minimize thatstress for people that cause I
get an Airbnb is expensive, likeflights are expensive, and it's
(40:09):
not easy by any means.
But I think because of thenature of that time period and
working remote and I had ahandful of people that were away
so it was able to extend mystay there and stay at friends'
apartments or whatever and havesome help.
So I don't wanna dismiss thataspect for people and I do feel
that that worked in my favor aswell to have a bit of a network
(40:32):
in LA.
But I think that's also why Ifelt so comfortable and
empowered to go there alone anddo the surgery alone, because I
wasn't actually alone.
I had plenty of friends aroundthat were just a phone call away
.
But I guess I've always seenmyself as, I guess, an
independent person.
But once you do certain thingsor you achieve certain things,
you're like okay, well, now likehow much?
(40:52):
What else could I?
What more could I do and yousort of almost lose that part of
like that, what it feels liketo do something for the first
time or have that challenge.
So I guess that's what thesurgery felt like to me from
beginning to end.
You know I'm calling an Uber inthe morning and going to the
hospital, you know, the crack ofdawn and checking myself in.
It's like immediately they makeyou feel so supported and
(41:14):
taking care of at the hospital.
It's like you constantly aresurrounded by teams of people
looking out for you and Ithought everybody was so lovely
there and the day just felt likea dream.
That's why I called it a Grey'sAnatomy episode in the article,
because in my head I was likethat's what this is.
So I'm like I really did feellike a star, like getting wheels
out of the hall in my thing andeveryone trying to comfort me
(41:34):
and make me feel okay, asthey're like sticking it who
knows how long that needle iswith the nerve blocker into my
leg.
But I'm like, with all thatattention I felt great and you
know, I think then in theaftermath of it it was just sort
of finding a different strengththat you don't necessarily know
you have until you're facedwith a situation like that and I
(41:57):
think, instead of looking at itlike, oh, this is so hard or so
difficult or why did I do this,it was more the opposite.
It was like look how much I cando on my own and I'm doing this
all.
For in the back of my mind thewhole time was like this went
well.
And Dr Pfeffer told me that andlike I didn't know exactly what
I would walk like afterwards,but I knew it would be better,
(42:17):
hopefully, and any improvementat that stage was a plus for me
and was an advantage.
So I think keeping that in theback of my mind the whole time
made it feel that like every daywas worth it.
But I think it was just a newchallenge and a new way to sort
of prove to myself like, oh, Istill got it, I can still sort
of take care of myself.
Not that I didn't rely on peopleto bring me food or help me
(42:40):
into the bathtub when I firsttried, but eventually it's like
you get a routine down and yourealize sort of how much
strength you have I guess Notjust in a and it's ironic
because we're talking about thestrength of our foot and muscles
and walking and things likethat.
But I think it's like you kindof dig down for something deeper
as well and then you kind oflean on that throughout the
(43:01):
whole process.
So I think it was more proudthan anything.
Speaker 2 (43:06):
So I think people will really they already have.
I mean, your post is really.
It's probably the longest postwe've posted ever.
I'm sorry it's not short.
It has many pictures of howBecky looked before, after
surgery, the process of recovery, and you know, it's really even
(43:29):
if you're not consideringsurgery or thinking about
surgery.
Your story about you know,going from denial to acceptance
is really powerful and I thinkmany people who haven't read it
should and I hope you do so,becky.
What?
Because I'm just curious, and Iknow people are tell people
(43:49):
what you do quickly now so thatthey know if they are watching
show and they're like oh well, Iwonder what that woman who was
on in Breeze it with Lainey andEstella, I wonder where she
works now.
So where do you work and whatdo you?
Speaker 4 (44:03):
I'm the senior field producer at last week tonight
with John Oliver and this is myfifth season in New York.
Speaker 3 (44:09):
I love that you are able to kind of come full circle
now and approach your life withmore authenticity and just more
I can see you're just morecomfortable because I've been
there with you in certain stagesof your journey and we've met
up in the city and we've talkedabout this personally and you
(44:31):
just look lighter and you soundlighter and I think that's
really the underlying messagehere is that you know,
uncovering our truth andembracing our authenticity is
not like this linear, nicestraight path.
It is.
It's got its ups and its downsand sometimes you retract, you
go back and then you go forwardagain and it's got all these
(44:54):
loops and turns.
But at the end of the day, Ithink, if we still keep our eyes
on the prize which I think foryou at the beginning, you know
you knew right away that youwanted to become this person
that was comfortable in theirown skin and it was just a
matter of finding your own pathto becoming that person.
And you really just are abeautiful advocate for learning
(45:17):
how to advocate for ourselvesfirst, right Before we can
advocate for the disabilitycommunity or whatever disease
community at large, becausethat's the foundation that
you're gonna be able to buildthat muscle from.
Speaker 4 (45:30):
That's exactly right, and I think that's why I kept
flip-flopping with I want to bethere where you two were.
I looked up to you guys, so Imean I still do, but I think at
that first dinner I'll neverforget how powerful that was.
And I looked up to you guys andI was like I want to be like
them, I want to be able to betalking about this because
they're both so beautiful insideand out and are doing so much
and so smart and strong andambitious, and I would love to
(45:54):
use this for good too.
But I think the conflict I hadto deal with was like getting
there on my own first, before Iwas then ready to like actually
put myself out there in aneffective way.
And I'll just add that, like Ithink, with the confidence and
feeling lighter, I'm glad thatthat comes off, because that's
how I feel.
I do think surgery had a hugeimpact on that, not just because
(46:14):
it came out like, oh okay, Iwant better.
I think it was just the wholeprocess had had something to do
with that, and it gets me alittle bit closer to that 3.0,
as you mentioned earlier, laineyof not just being able to find
a way to talk about it in two tothree sentences, but actually
using it as a way that it sortof shapes me as a person.
(46:34):
That makes me more interesting,have more depth, I think, and I
guess that was perhaps why Ialso felt like I now reflect on.
Surgery is such a greatexperience, because I think that
was a big takeaway for me aswell.
Speaker 2 (46:47):
Becky, even though and, by the way, estelle and I
are so proud of you, but eventhough I am not like Claire
Royne, I don't know for sure Ihave this gut, this very strong
belief that you now is when youwill meet the perfect person for
you, because you are open andyou're authentically you and
you're taking care of yourself,and that's when that probably
(47:10):
will happen.
So I can't wait to hear aboutthat and I better be on the
cutting list.
That's all I got.
Thank you, I love you guys.
We're gonna spend what we tryto end with when we remember to
end this way, which is, we'dlike to ask you tell us what
embrace it means to you.
Speaker 4 (47:28):
Okay let me, I don't wanna jump the gun here.
I'm gonna think on it like aRuth Bader Ginsburg would.
I guess it kind of goes alongwith the theme of what this
podcast has covered, which isthe moment that I was fully able
to embrace it myself.
It's just incredible how mylife shifted and kind of opened
(47:52):
up again.
It's like for the longest timeI would say I want to be like
the old Becky that was just socomfortable in her skin and
would go anywhere and talk toanybody and there was really no
insecurity.
I guess Not that I was overlyconfident either, but it was.
I had.
(48:13):
Honestly, I'd never dealt withdepression before I'll just use
that as an example Whereas I hadsince then.
And the difference now is thatI don't want to go back to old
Becky.
I really like who I am todayand I really don't think I would
change it, which would havebeen very difficult for me to
have said, even maybe three orfour years ago.
I like how it's shaped me as aperson and make me have a
(48:37):
different perspective andunderstanding of other people,
whether it's CMT or somethingelse entirely, and I think all
of that has to do with justembracing it and accepting this
as part of who I am.
It's not all of who I am, butit's a part of me that I don't
have to be ashamed of and thatif I actually speak of it and
could put it out there in a waythat might be helpful or
(48:59):
effective for other people, thenthat's actually a pretty
amazing thing.
That makes me kind of proud, tobe honest, to be sitting here
with CMT, with you two, talkingabout major I don't know life.
Speaker 3 (49:16):
That is a that's an Emmy award winning answer right
there for TV producer.
Speaker 4 (49:21):
Oh my gosh, you're too fine.
It peered out.
I'm gonna listen back to thatand be like oh gosh, edit it.
Speaker 3 (49:26):
Nope, nope, we're gonna embrace all of it, every
imperfection, every misstepalong the way, and we really are
just so thrilled to see you inthis space, becky, and I'm
confident that, moving forward,that there will be lots of other
opportunities in our paths towork together, to partner
together, to align our missionstogether and empower the
(49:49):
community on each other.
So thank you for what you do.
Speaker 2 (49:52):
I know you're super busy, so thank you for coming on
and people, if you wanna get intouch with Becky, read her post
.
She's been commenting on allthe comments that are on the
post, so probably a great way toconnect and ask questions that
you might have.
Speaker 3 (50:09):
And one more thing.
I'm gonna share Dr Pepper'spage from the HNF website in the
show notes.
For anyone who would like tolearn more about Dr Pepper and
have a free virtual surgeryevaluation, feel free to visit
that page.
Speaker 4 (50:24):
Thank you both so much for having me and I'm sorry
I look like I just rolled outof bed.
Speaker 3 (50:29):
This is why we do a podcast.
Sweet, yes, all right, bye,guys, thank you.
Hey Embracers, thank you somuch for listening and
supporting the Embracid podcastBrought to you by Launchpad 516
Studios executive, produced byGeorge Andriopoulos and hosted
by Laini Ispia and Estella Hugo.
Our music and sound effects arelicensed through Epidemic Sound
(50:51):
.
Embracid is hosted withBuzzsprout.
Speaker 2 (50:53):
Do you have a disability related topic you'd
love for us to feature, or couldsomeone you know be a fabulous
guest on our show?
We would love to hear yourcomments and feature them on our
next podcast.
So leave us a voicemail or youcan even send us a text to
631-517-0066.
Speaker 3 (51:14):
Make sure to subscribe to this feed wherever
podcasts are available and leaveus a five star review on Apple
Podcasts while you're at it,follow us at Embracid underscore
podcast on Instagram and makesure to follow all the great
podcasts produced by Launchpad516 Studios.
Speaker 2 (51:30):
We hope you join us next time and continue to
embrace it.
Welcome to the Embrace it series, where women
with all types of disabilitiescan be real, resourceful and
stylish.
With each episode, you'll walkor roll away with everyday tips,
life hacks and success storiesfrom community leaders and
influencers.
So take off your leg braces andstay a while with Lainey and
Estella.
Speaker 3 (00:26):
Hi, I'm Lainey and I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Speaker 2 (00:37):
That's as many as MS.
We believe disabilities shouldnever get in the way of looking
or feeling good.
Both of us wear leg braces andhave learned through our own
personal journeys to embrace itBrought to you by Launchpad 516
Studios.
Speaker 3 (00:52):
each episode is designed to challenge your own
stigmas and beliefs arounddisability.
We want our listeners to getthe most value for their time
spent with us, so we interviewsome of the most empowering
disability badasses in the world.
Through storytelling, personalexperiences and tips, we're all
reminded of our own strengthsand endless potential.
Speaker 2 (01:09):
For more information and exclusive resources, check
out our websites attrend-ablecom and hnf-curorg,
and don't forget to hit thesubscribe button for future
episodes and special promos.
Hi everyone, I want to well,estella, and I want to welcome
(01:33):
you to another episode ofEmbrace it, and today.
I know we start off every timesaying we have a special guest,
but this one is special to bothEstella and I in a huge way, and
I think many of you who listenhere and we know we're all about
you know all different types ofdisabilities and having
influencers and people who aredoing amazing things with all
(01:56):
different types.
But today we have, I guess,with us who has chakramary tooth
disorder, like Estella and I do, and she's super cool and
awesome and has an amazing storyto share and you know she's
also sort of like in theHollywood world.
Well, she is in the Hollywoodworld and has done really cool
things which I'm going to lether tell you all about.
(02:18):
I want to welcome BeckyEdgeberger to Embrace it.
Hi, becky, hi.
Speaker 4 (02:25):
Thank you guys so much for having me.
It's such an honor.
It has been a journey bothindividually, but also with you
two.
I think from the moment I metyou both, my own acceptance has
gone up and down like a bit of aroller coaster.
So it's nice to finally be onthe other side and talk openly
about everything with both ofyou.
Speaker 2 (02:43):
When you and I first met Becky just to give people a
little update I launchedTrendable.
Now it's been almost six years.
Can you believe it?
I mean crazy.
So six years ago I put thiswebsite out to the world, had no
idea what the response would be, and one of the first emails
you know the month I launched itwas from you and like in it it
(03:07):
was basically like I have CMT,my aunt saw your website and
passed it on to me.
I'm kind of in denial, but I'dlove to do something.
I do a lot of dating or tryingto date in the world of you know
20 something people.
At the time you were in your20s, right, and you were in the
Hollywood world doing American.
(03:27):
Were you doing American?
I think it was American Idol,or you have just finished
American Idol.
Speaker 4 (03:32):
And I was.
Yeah, I just finished AmericanIdol and I was working at the
Voice at the time, so my kidsstarted jumping up and down.
Speaker 2 (03:38):
They're like it was like as if you were like one of
the main stars of one of thoseshows.
They were like super excitedand you wrote for me you know
one of the best like blogs wehave, which was on your
experience with dating with CMT,and at the time you were like
it's okay to put my name on it.
(03:59):
I'm trying to be more open andaccepting and I'm learning about
CMT and what I have.
My mom really didn't talk aboutit much, but you know this is
my attempt to like give back andfast forward.
I don't know, I think it wasmaybe a year later, two years
later, I don't know.
Speaker 4 (04:19):
It was probably two to three years later, I was
already living in New York,you're like Lainey, I'm dating
and all these guys.
Speaker 2 (04:28):
When they Google me, not only do they see American
Idol and the Voice and all thestuff I do, but then they see
this article that says you know,living with CMT and dating, and
I don't want them to see thatbefore I tell them or feel like
I want to tell them.
So can you remove my name fromthe internet?
How do I do that?
And then I was like, oh my God,okay, and so fast forward and
(04:57):
we're going to get to this.
Just last week, becky wrote anamazing post about her
experience and her life andwe're going to link to it and
about her experience havingsurgery recently for CMT with
CMT, and you promised me in yourbeginning part I would not make
(05:18):
you or ask you to take my nameoff of this.
Speaker 4 (05:22):
But going back?
No, going back, that's right.
No, you've got to add to that.
You've retold that perfectly.
And I think what I experiencedwas the difference between where
I wanted to be and where Iactually was.
And I think in my mind Ithought, of course, what a
wonderful opportunity.
I think when I saw your website, it was sort of this idea that
(05:46):
I was like I mean, I can't say Ithought it, but it felt like,
oh, what a I relate to thismoment, this woman that has CMT,
this is a living with a reallife, who wants to dress cute
and not necessarily sacrificefashion but also live her life,
both socially and with therelationship, just confidently,
(06:06):
and everything we would see whenyou Google CMT.
It's like I can't identify withthose women.
And I think when I saw yourwebsite, I immediately
identified with you and thought,yes, this, this is so important
.
But then when I, when we didpost it and then it was put into
practice, and then Iexperienced the reality of men
telling me, which soundsridiculous, it sounds a bit vain
(06:27):
, I guess, to assume.
I really don't think all menGoogle your name before first
date, but it did happen morethan once, so that was enough to
scare.
Can I swear?
Okay, scare the shit out of me.
And I think my insecurity hadnot caught up to where I was
hoping to be mentally, and so Iwas still.
My gut reaction was just, canwe bury this somewhere?
I don't want this out therebecause I'd rather tell them
(06:50):
myself, you know, and I justthink I needed to get there on
my own.
But yes, coming around to I waslike you're going to think I'm
crazy.
Speaker 2 (06:58):
But let me just say for any teenagers listening
guess what?
When you put your name tosomething and your face on the
internet, you can remove names,but it's forever there.
They will still link to youbecause your name was attached
at one time.
So you can never completelyremove someone from anything you
(07:22):
post.
So please don't take a picturesand put it on the internet ever
.
A little public service messagefor those people.
Speaker 4 (07:30):
Good luck then to learn.
But yeah, I think at thebeginning you were like okay,
well, this sounds like a greatidea.
But just so you know, I don'tthink I can just post something
with you know, an anonymousauthor, I don't know.
I've thought about it long andhard and I am ready.
I'm prepared, so attach away.
Speaker 2 (07:46):
Yeah.
Speaker 3 (07:46):
And you know, becky, and I too, I was there at that
first meeting where I was alsothe first time I met Lani in
person.
So both of you, that night weconnected in New York City and
it was just I just rememberfeeling so energized to be at a
table with women my age talkingabout CMT.
That was never, that had neverhappened, other than you know me
(08:10):
and my sister in my entire life.
So I just remember that being areally, you know, special day.
And then fast forward.
You know, in addition to thearticle that you were doing with
Lani, we were excited to bringyou in on H&F side too and see
if we could merge your, you know, writing about dating with the
(08:32):
CMT world and share a little bitin a video format, kind of a
mini documentary that we puttogether for CMT called dateable
and just you know, a quicklittle skit about a woman like
yourself dating with disabilityout there and what that was like
(08:52):
.
Maybe you could give us like alittle bit of a teaser, because
we're going to put the film inthe show notes, but tell us a
little bit about what we endedup doing for that.
Speaker 4 (09:00):
Yeah, that's right, gosh, that was right after I
moved to New York, so it wassuch a whirlwind time and when I
look back on that, I'm so proudthat we managed to get that
together and put it out thereand attach it to that premiere
of that documentary in time andimpact, even from the people
that saw it there, which waswonderful.
But I think it was really justtrying to narrate the thought
(09:25):
process that I tend to gothrough before First States and
learning that perhaps I put somuch pressure or emphasis on the
CMT factor while notnecessarily realizing that
everybody sort of has aninsecurity or something about
them that they might immediatelysort of have pop in their mind
as soon as they're approaching abrand new person and trying to
(09:46):
put themselves out there like,oh gosh, they're going to notice
.
I think we went with, we decidednot to go to disabilities, we
decided to go with a guy thathas a bald spot that's not
necessarily visible in hisphotos or whatever, but what
that feeling is like for thatperson too.
Meanwhile, the whole time I'mdriving myself absolutely insane
trying to minimize my walk andif it does come up, how do I
(10:08):
bring it up and how do Iapproach it what do I wear and
where do we sit, and all of thatand then cut to at the very end
, revealing his own internaldialogue, which was like God, I
hope she's cute, I hope shedoesn't notice my bald spot, and
it's like, I think, a lot oftimes when you just come down to
that, like no one's reallynecessarily paying attention to
the things that we tend toobsess about.
Speaker 3 (10:29):
Yeah, I mean it was powerful and we definitely
encourage everybody to checkthat out and you're right, it
was.
What was really intriguing forme was that it was that internal
dialogue, that we think we'rethe only one with that internal
dialogue but really everybody'swalking around the earth with
that.
You wrote in your article withLaini a lot about your personal
(10:52):
journey, accepting CMT and likecoming out with CMT.
What do you think were parts ofyour childhood that may have
because you talk about?
You know your mother'srelationship to her CMT and how
that affected you and I thinkthat, again, that's so important
to look at our family dynamicsaround disability and how they
(11:14):
affect us and create thoseinternal voices as we become
adults.
Speaker 4 (11:19):
Right, and I think that was something important to
me with writing the article,because not to jump too far
ahead, but I think initiallybringing the idea to Lenny of
like I want to tell the story ofmy surgery journey because it
was so impactful, and it wasn'tto tell it to be like, oh, look
at all this big stuff I wentthrough, because I didn't feel
that way.
I felt like this was such anincredible opportunity, an
(11:41):
amazing ride, and I wanted tosort of put it out there, to be
like you don't be intimidated bythis process, because it was
actually.
I found it to be quite lovelyand I learned so much about
myself and surprised myself in alot of ways.
But to sit down and start atthe surgery point felt like it's
starting halfway through amovie and it was important to me
and I began writing thatbackstory about my mother and I
and communication and and we'relack of it growing up about CMT,
(12:05):
because that was how I got tothat place.
And so I was like, even if wedon't end up including this in
the article, it felt that Ineeded to write that out for
myself first to then get to thatmental space where I was when I
finally pursued the surgeryaspect of it and I think that's
also how I got to likecontextualizing my mother's
(12:25):
period in her life when shestarted showing symptoms in her
late teens, early twenties, andwhat that was like for her,
because it was so easy for mewhen my before I had CMT or
before I had symptoms of it, orwhen they were still mild, to
judge her for that or to becritical of it or to blame her.
And I think when you take astep back you realize, oh,
there's so much more to it.
(12:46):
The story is not that simple andreally it had to do with the
time period in which she grew up, the communication style of the
family, the fact that her dad,who had it, wasn't even alive
beyond, you know, 18 years old,so there was no sort of plan in
place of this is how we're goingto talk about it.
No one showed her how to talkto kids about it, so like, how
(13:07):
would you know how to thendiscuss this with your own kids
when they're going throughsimilar experiences?
And I think part of what Ilearned to was those early years
that were so difficultemotionally and hard for me to
understand that I was still awhole person and also still cool
and still, you know it could beattractive regardless of this
(13:29):
thing.
It was I think I experienced itthe same way that she probably
did which was like, oh no, thismakes me less than, or this
makes me below average.
We were so active and now I'velost that.
How well, if I can't see myselfas whole, how are other people
going to see myself as whole?
So I started noticing that I wastaking a very similar path and
(13:51):
I, I guess I just I don't wantto compare it to her because I
think she's had she's through meand through me being so open
about it eventually has sort offirst forced the conversation
there as well, which has beenwonderful to see, because I
think I realized I don't want tonecessarily have this battle my
whole life of worrying aboutthis as more, of seeing it as
(14:13):
more of a burden and not beingable to talk about it openly
because I can.
I see now how that not isn'tnecessarily health, healthy both
for you and your relationships,and that was the other thing I
put.
It definitely put up a wallbetween me and I would say I
would say men and dating,because my friends of course
were, and family except me forwho I am, and a lot of times
they would listen and identifywith what I was, tried to
(14:37):
identify with what I was goingthrough.
But at the same time I think itwas harder for them because
they're like, well, I don't, butyou're Becky, so I see you as
who you are and you're wonderful.
It's not.
I don't see CMT ICU, you know.
So they would try so hard toexplain to me that like the same
thing could happen with men ofthe work, with people of the
opposite sex, but I could notfor the longest time see that.
And maybe that was physical,maybe part of that was, you know
(15:00):
, my mother was a cheerleaderand I was a dancer to
cheerleader and we focus so muchon like her physical selves
that we kind of forget oh,there's this whole other aspect
to human beings that goes beyondthe physical.
Speaker 2 (15:11):
Yeah, and my story you know, even though I love
that.
Estella said that when she metyou and I for the first time.
It's like she was like people,our age, but literally I'm 10
years older than Estella andprobably I don't know 20 years
older than you or something.
So but my experience wassimilar because obviously you
grew up like I did, where therewasn't internet and, you know,
(15:33):
there weren't people that wecould see, that looked like us,
that your mom didn't have people.
My mom, who you know, you guys,most of you know, has CMT and is
now deceased.
She died literally three weeksafter I launched the website,
but she wasn't embarrassed, shejust didn't talk about it ever.
(15:53):
She just made it because mymom's disabilities were very
visible.
She had hands that were verymuch clenched in a fist.
She had trouble getting in andout of a chair, pulling up hands
, all of that stuff.
So it wasn't like invisible,like my disabilities mostly are.
So she was constantlyencountering people who were
(16:15):
like what's wrong with you?
What's wrong with you?
And my mom was just.
She taught me indirectly likejust blow it off, you don't need
to go into detail, like just,it is what it is Like.
So I lied all the time I'd belike I was in a skiing accident
and I was in this whatever.
Because it was so much easierand because of the stigma that I
(16:37):
know exists with you know, whenyou say you have something.
So you know, when you wrote thatarticle about dating, I at that
time I had I was married toHoward, but I had a short window
of time when I was divorced andin the dating world again with
leg braces for the first time,because when I was originally
(16:59):
married to my kid's dad I didnot wear leg braces.
And I remember that grippingspear of like this guy seeing
the leg braces, which meant likeI'm never going to get into
mimicking blood and because thenthey'll never see him right.
So I remember that feeling oflike oh, what if he touches my
leg, like lower than you know myknee, like then he'll only see
(17:20):
him.
So, people who are listening,you know we were there, like I
was there, becky was there, youwere, you know, and it felt like
it's it's so much better.
I don't know about you, becky,but like my life in general is
so much better, just beingdirect and authentic and it's
it's a saying of.
I don't know if this is asaying or if it's just something
(17:42):
I say, which is probably true,which is like, you know, the
things you focus on, like whenyou focus on your CMT and
whatever that's what people willfocus on.
But if you don't make it anissue and a bad way, then
chances are the guy, the girl,whoever you're seeing, isn't
going to make it a big dealeither.
You know that's.
Speaker 4 (18:01):
That's that's perfectly said and I identify
with that so much.
And that was something that oneof the many things my therapist
worked on with me was wasexactly what you just said she
was.
She helped me a lot tounderstand that, because at the
time when I started seeing herand my motivation was twofold it
was CMT and like my father hadjust died.
So it was like enough, enoughis enough.
(18:23):
I guess it's finally time tolisten to my friends and like,
see somebody and and Iunderstand now the benefits and
it was slow, it wasn't immediate, it's not like one session and
you're cured.
It takes persistence.
But she, it was exactly thatthat we tried to focus on.
It was like how do you, as longas you see it as this big thing
and it's the first thing aboutyou when you walk in the door,
(18:43):
or that's what you perceive thatother people think about you?
Then then the other people pickup on that energy, whether it's
friends, family or potentialrelationships.
And it took me a long time tobreak through that and it wasn't
necessarily a linearprogression.
It was like some, some weeks orsome dates were better and then
(19:03):
I would slip back down and youwould continually work on it.
But eventually it was startedthis sort of steady decline.
But you're absolutely right, itwas like when I was finally
able to get there and shift myperspective on it a little bit,
and not that it's like okay, Idon't have it, I'm going to
ignore it or lie about it whichI understand, that too, I've
done that in the past as wellbut kind of find a different way
to frame it.
(19:24):
And I think once I was able todo that for myself and then work
that into conversations when itwould come up it's two
sentences max If I want it to bein.
She opened.
My therapist also taught melike I can drive that
conversation.
It doesn't have.
I don't owe anybody anyinformation.
I can share as much or as littleas I want to about myself, but
I can also say it without somany words of going into, like
you know, a health, like adoctor exam on a first date.
(19:45):
You don't have to do thateither.
But I overall, once I'veshifted that perspective, I do
feel so much lighter and like mylife is so much better, because
that's not the forefront of myfocus with everything it's.
It's amazing thing how muchmore honestly fulfilling my life
is, but also how much more roomthere is for other stuff that
(20:06):
actually matters.
It's like that doesn't matterin so much as it's.
It's not going to go away if I,no matter how hard I think
about it or how much time energyI waste on it.
So maybe it would be best totry to minimize that a little
bit and focus my energyelsewhere.
Speaker 2 (20:22):
Yeah, yeah, you really did.
The 2.0 version of coming outof denial and acceptance, and I
would say the 3.0 version, whichmaybe this new post that you
wrote will help you to get there, is not only not making your
disability be a big deal andusing it maybe as an excuse to
(20:43):
not date, but then how aboutthat?
It gives you strengths thatothers might not have.
That you see, that guy thatyou're meeting and you're like,
oh, I have a disability and youframe it, which is true that
this makes me like a catch,because I'm literally going to
be the person who's going to bemore sensitive, more aware when
(21:07):
you dude get old, like I know,because I get it, like all of
that.
But your blog post, gettingback to that which is, was
amazing, your most recent one,which is, like as Estella said,
all about your journey, startingwith, you know, the messages
you got growing up in yourfamily and then to you today.
(21:30):
You know, kind of give us, ifyou don't mind, like I guess,
the abbreviated version of whathappened, absolutely.
Speaker 4 (21:38):
It's.
It is funny that it starts outwith shoes Like you look like
wow, I thought everything was sohard.
It was like I can't wear myfour inch heels anymore.
I had to downgrade to three.
It's like now I have noplatforms of any kind in my
closet.
But I say that with a smile onmy face because I don't care
anymore and that, I guess, is awonderful feeling to see how far
(22:01):
you've come and I, yeah, backthen it started because I,
because it was hard.
I was definitely not a placewhere it's open to talking about
it.
So the first concern was likeoh gosh, yeah, what do I?
I like to be stylish, I like tolook nice.
Plus, I'm only five three.
I'm short.
I'm like you know, puttingmyself on still so I'm.
So I'm taller and had alwayshad big calves, to the point
(22:23):
where I used to think my calveswere too big.
It was hilarious, the thingsthat we focus on.
But I think I guess the next bighurdle really was dating,
because I was also newly singleat that time.
So I think it was also tryingto navigate, you know, dating
apps for the first time andactually being that person as an
adult that goes out on dateswith strangers and puts yourself
(22:47):
out there repeatedly.
I had never done that before inmy life.
Like college, I could care lessand then dated two guys for
four years back to back anddidn't deal with this.
So I think it was coming toterms with that, which is
probably why that was at theforefront of my mind when I saw
your website for the first time,Laney, and wanted to be a part
of it.
It was how do I work this intodating?
(23:08):
And I think what I had torealize the hard way was that I
was putting the car before thehorse and I had to have that
journey on my own before.
You know, it's hard to saywithout sounding a bit cliche,
but it was true.
I had so far to go on my ownbefore I was ever ready remotely
(23:29):
ready to let somebody else comeclose, when I wasn't even able
to kind of see that part ofmyself yet.
It was one thing to talk aboutshoes, but it was another thing
entirely to like accept thatthis is here to stay.
It's probably going to getworse.
Tripping increases your sort oflife quality.
You have to shift some of theactivities that you used to do
and, yes, with work.
It's like my job is on my feet,not necessarily every day, but
(23:52):
such a big part of it is runningaround a set being in
production and it doesn't slowdown for anyone.
So it's like how do I sort ofmerge the two and not just talk
about it on dates anymore?
But it became like how do Imaybe comfortably talk about
this at work?
And because of the nature of myjob I work directly on
production, so I do tend toswitch show every two years,
(24:14):
three years.
You know I've had some goodruns with five years, including
my current show.
But it's like every time whenthe CMT would get a little bit
worse, it was like, hey, maybe Ido have to address this, but
you actually don't.
It's like I guess it otherpeople don't care, Like at last
week tonight, no one ever askedme for the first year and a half
that I was there about how Iwalk or am I okay on set.
You know, nobody babied me.
It was sort of like it's on myterms.
(24:35):
But when it got to a pointwhere it was like I wouldn't
mind being a little bit vocalabout it to say I, if I'm going
to be on set all day, I need achair, I need something to at
least lean on in between.
I need to go a little bitslower here.
I need somebody to go do thisother thing.
I was very aware of not wantingto put two.
I'm certainly stubborn in thatway, Like I want to do
everything myself, but it doesbecome empowering to also ask
(24:59):
people for help when you need it, and I think the part about
learning how to communicateeffectively, both in with
potential dates, but also atwork and with that with anybody
that might not understandexactly what it is, became a
huge tool for me.
That helped to my success thereas well, because the same went
at work.
(25:19):
The more I was able to sort andnot with it being this big
health conversation.
I'm just like oh yeah, I have aneurological disorder.
It's a bit difficult for me.
The muscles in my hands andfeet are weak and balancing is
hard, which I find myself alwaysexplaining the balance thing,
because you don't see it.
You see somebody, I guess, butyou don't see that part, but
it's like on set.
That's something that'sprobably the hardest for me, and
(25:41):
the more I would have aboutthat, the more receptive people
are and so willing to help you,and I think they like to be
loving on that too.
And then it is that relief like, okay, great, you know, now we
can move on.
I guess that was.
I guess the next step wasdealing with it at work.
And then I think, throughoutthe whole time just continuing
(26:03):
therapy and trying to hold upthat mirror and get a little bit
more comfortable in my own skin.
I think New York helped me inthat way too, because I realized
everybody has so much going onin their own lives that no one
cares, no one's looking at mewalking down the street.
They all have plenty going on,and I just think I feel a lot
(26:24):
like myself in this city as well, and that also added to my
confidence.
And so it all kind of workedtogether.
And now I was still I don'twant to say stubborn, but I
think the way I framed it in thearticle was that I was, while I
had made some mental progress,I did still at times struggle to
(26:45):
accept that AFOs were the onlyoption, that's it, nothing else,
and you'll walk like thisforever.
So that's how I ended upcontinuing the research and
finding Dr Pfeffer online andimmediately recalled meeting him
years ago when I was nowherenear considering surgery and
kind of went down that rabbithole and got obsessed with that,
(27:07):
Not necessarily at that pointfor trying to achieve perfection
physically.
I think I had finally gotten toa point where it was less about
that and more about if I couldimprove my quality of life if I
could walk just a little biteasier and make my life on set a
little bit easier.
I walk so much in the city Likethat felt like reason enough.
(27:29):
Like at that point I'm like I'mnot trying to achieve like go
back.
I understand that I'm not goingto go back to my pre-CMT body,
but even if we get anincremental improvement, that
seemed worth it to me.
But I do think that emotionalpart was really necessary to get
to before going that route.
So I do think you have to be abit emotionally strong to go
(27:50):
through that process and beready for it.
You know.
Speaker 3 (27:55):
We'll be right back.
Speaker 6 (28:06):
This is George, fred and Jason, the co-leaders of
Speak, interrupting to say thatwe hope you're enjoying this
episode, but please make sure tocheck out our new show, the
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New episodes available everyweek on all of your favorite
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Speaker 5 (28:25):
Each Speak Talk is about six to ten minutes in
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There are three key moments ineach Speak Talk the moment of
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We'll let you get back to the show you were
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Speaker 3 (29:05):
You're tuning in to embrace it with Laini Anastella,
brought to you by Launchpad 516Studios.
I think there's a lot ofexpectations there, especially
with surgery, and you have to berealistic to some degree
because, like you said, it's nota cure by any means, but it is
meant to improve your quality oflife and your function.
(29:27):
I remember when I had mysurgery, my surgeon promised me
that I would never have to wearleg braces again At the age of
12, that was the most importantthing in the world to me.
Just to fit in, I took his wordas absolute truth.
Within a year I was wearingthem again because I just
realized I am.
(29:48):
I feel like I'm walking inquicksand.
Even after the surgery I wasway better, my feet were
straight, but I was just notfunctioning at the way I was.
For you to come to that placebecause I think, whether it's
CMT or not, a lot of times thesurgery or major
life-interrupting treatment is abig decision we have to take a
(30:09):
leap of faith that that is goingto be something on the other
side, even though it's going tobe a really shitty situation for
a while, that that's going tobe what's best for us and that
the risk is going to be worth itand that we need to come to a
place where we need to put ourlife on hold, as I'm sure you
had to experience putting yourcareer such a busy and
(30:32):
time-consuming and anenergy-consuming career on hold,
to put yourself first.
Can you tell us a little bitabout when you made that
decision and you said it wassuch a positive experience for
you in so many ways, I think?
Speaker 4 (30:46):
also what helped, because it does require so much
time away and away from work.
It was important that I wasable to even have those
conversations.
Before you bring up hey, by theway, I have this where do you
even begin that conversationwith your boss if they don't
know anything about it?
So I think, getting to thepoint where I was like I feel
comfortable and open enough tobe able to talk to them about
(31:08):
this the people that I need tothen I explained it and I think
only to two or three people atwork all of my bosses, and they
couldn't have been moresupportive and they were all
like you can give as much or aslittle info as you want, don't
feel that you have to, but ifyou would like to share, I would
love to learn.
I loved that because it made me.
It was like they were taking agenuine interest in what I was,
(31:31):
not just the dates of thesurgery, but the why's and how
it made me feel and what I wasgoing through, and so I think
all of that helped a lot.
But I will say I got I guessperhaps lucky is not the right
word, because it was a pandemicand I realized that a lot of
awful things happened duringthat time, but when it came to
removing myself from day to dayroutine, I was working remotely
(31:54):
already anyways, because it was2020 and we typically have about
a two month hiatus over winter.
So in my mind I was thinking,well, I could do it over winter
and potentially that bleeds intothe beginning of next season,
but we will most likely still beremote anyways.
So hopefully it's okay.
(32:14):
And when I brought it up, theresponse was well, you could
tell.
And I was like I'll wait untilafter a bit.
We did this huge finale shootand it was really intense and
crazy and I was like I'll waituntil everything's done and
wrapped up and schedule thesurgery for, like immediately
after that.
And they were like you couldtell us that there was only one
time of year that they could dothis surgery and it was at the
busiest time and it would stillbe okay because your health
(32:37):
comes first and that was theanswer.
So it sealed the deal and madethe whole process, I guess,
going into it easy, because itwasn't.
I wasn't feeling stressed oranxious when it came to what I
was missing.
I'm also single.
I don't have any kids or family, so I understand that.
That's something else thatpeople have to consider.
Speaker 2 (32:54):
I know people are listening and we are not.
Estella and I, norbecky, noneof us are doctors, none of us
are CMT medically trained.
We might know a lot but we arenot.
And also, I wanna also say thaton hereditary neuropathy, hnf's
website, which we're gonna putin the notes, they have a whole
(33:15):
section on surgery and links tothe surgeon so you can get your
own virtual assessment whetheror not you'd be a candidate,
completely free.
But, becky, what was it forthose who are listening, who
aren't gonna go to HNF andaren't gonna take time, is there
like, how did you know you'd bea candidate?
Like what was that In a quickthing, without being a doctor?
(33:37):
People who are listening, Iknow I wouldn't be a candidate.
I wear two leg braces.
I've worn them for many years.
There's no helping me to haveby having surgery, like there's
nothing that surgery wouldbenefit me personally, like his
surgery, but you were different,yeah no, that's a great
question.
Speaker 4 (33:55):
Honestly, I did not know if I was a candidate or not
.
I just in my head was, like Iam going to do this, like I will
do whatever it takes to get DrPepper to take a scalpel to my
feet because he has magic hands.
I didn't do anything.
I also, look, I did have tomanage my own expectations in
that, which he is pretty clearwith every interview.
(34:16):
I think he's done, andeverything you'll find on the
internet about him is that noteverybody is a candidate, like
you said.
He will even tell you somepeople are better suited for
braces and will be helped morewith braces.
Some people you know I thinkthe most obvious ones are people
that tend to walk on theoutsides of the feet.
He can help flatten that out,even if you do still need braces
(34:37):
, so that one becomes mostobvious.
Now the other thing he looksfor is having some strength and
other tendons in your foot.
So some may be weak, but youmay have some others that still
have a lot of strength and he'slooking for those other strong
tendons that he couldpotentially move to the top of
your foot to then help it liftup, to help with foot drop.
Speaker 3 (34:58):
So I think that's Because your surgery was a
tendon transfer, which isanother common CMT.
But then of course there arereconstructive bone realignment
surgeries.
So that the we're talking, youneeded to be at a certain level
for the tendon transfer.
Speaker 4 (35:15):
Exactly and we actually did both of those.
So everybody that's the otherthing.
I guess it's a hard before youhave a consultation or if you're
out of state or out of thecountry.
They have sort of a short listof videos to take of your foot
feet so they can get an idea ofhow they move.
And we did do a fullreconstruction as well because
my foot was not at 90 degrees,it was well below the 90 degree
(35:39):
so he had to flatten it out inorder for the tendon to even
work.
But I think the normal, likesome of the regular tendons that
he's used to seeing, are ifyour foot can move strong either
inward or outward.
There's like a tendon that somepeople with CMT may not have
the ability to lift the foot,but if they can return, like
(35:59):
still can fully turn it to theleft, fully turn to the right,
those are like the top choices,I guess I would say for him.
And then he's also, I thinkover the last five, six years,
started doing the toe tendons aswell.
Some people still have strengthin their toes and the ability
to curl and flex them, and sothose will even help or
sometimes double up and addextra reinforcement.
(36:21):
I didn't have any of those.
All of the strength in thosetendons that he would look for
first were gone and that's why Ihad to be really persistent and
some things they pushy, but Iwas just like in my mind.
I was like he's my last hopefor it.
You know not braces, right,braces are in the other world
and I still have A-fills andsometimes on set I still I wear
(36:41):
them too because it helps myfeet still get fatigued and at
the end of the day they're notgonna lift as well as they were
at the beginning of the day.
But he eventually found thatthe when I pushed the ball of my
foot down, so basically theball, like just under the big
toe, still had a lot of strengthin it and it was not something
that he was doing regularly.
It was a very rare surgery forhim and I think that's why he
(37:03):
had to wait on it a little bitand wanted me to try the braces
first, to think on it, becausehe's also very careful.
He won't necessarily let thepatient decide oh, I'm a
candidate for surgery, so you'regonna do because I'm Becky and
I'm, you know, bossy, and gonnacome in and be like look, I'm
determined, you can do this forme.
Whatever it is, it'll help.
He's like not so fast, like Iwill not operate on people's
(37:24):
feet, that I know I will nothelp, or that won't come out on
the other side with animprovement, but you know, fast
forward.
I went back to him again andagain and eventually it's not
that he caved because I waspushy, I joke but he did assign
me braces and said you know youhave to try it.
I'm not gonna put a timeline onit, but you have to give it a
(37:46):
try.
And if it's still not right foryou and you're still wanting to
, you think you wanna pursue thesurgery.
Knowing you're kind of right onthe line of where I would draw
the candidacy for patients forsurgery, then I'll leave that
choice up to you.
And that was huge because I did.
I think I gave it about threemonths, but then I was like,
yeah, no, let's do it.
But he told me after surgeryI'm so glad that you were
(38:11):
persistent with me and that wedid go through with it, because
your surgery went so well thatnow I'm confident to do that on
other people and other patients.
And he performed anothersurgery, I think a month after
mine, for this woman who flewdown from Canada and did the
exact same surgery on her thathe did for me.
Speaker 3 (38:28):
Wow, that's amazing.
Speaker 2 (38:29):
So I also want to say , though, like before when I
said I'm not a candidate, thebig reason I wouldn't be a
candidate personally is becauseback when I was a young kid, the
protocol because I didn't knowa lot about CMT was, even though
I didn't fall yet, even thoughI didn't break ankles, they
fused your feet back then, orsome doctors.
(38:52):
So both of my ankles arecompletely fused.
I have no movement up and downor side by side, so that's why I
personally wouldn't be acandidate and also, for those
listening, that's also why someshoes work for me and don't work
for some of you that I post,because I don't have movement in
my ankle, so I don't worryabout falling down from a or
(39:14):
rolling my ankles on a higherplatform type shoe.
So that's that.
But, becky, your story isincredible and so interesting
and really you're his likebiggest fan.
I see all over your.
I'm gonna have like you shouldbe paying you to.
I'm a hero.
Speaker 3 (39:32):
Yeah, yeah.
You also mentioned that therecovery period after your
surgery was positive in a lot ofways and life changing.
Can you speak to why that wasand what you kind of discovered
more about your truth, oruncovered, during that time?
Speaker 4 (39:49):
And I guess that that's another way in which I
was lucky with this processbecause I used to live in LA for
a long time.
So for me, during the pandemic,to have to recover there was
probably easier than it is forall people.
So I don't wanna minimize thatstress for people that cause I
get an Airbnb is expensive, likeflights are expensive, and it's
(40:09):
not easy by any means.
But I think because of thenature of that time period and
working remote and I had ahandful of people that were away
so it was able to extend mystay there and stay at friends'
apartments or whatever and havesome help.
So I don't wanna dismiss thataspect for people and I do feel
that that worked in my favor aswell to have a bit of a network
(40:32):
in LA.
But I think that's also why Ifelt so comfortable and
empowered to go there alone anddo the surgery alone, because I
wasn't actually alone.
I had plenty of friends aroundthat were just a phone call away
.
But I guess I've always seenmyself as, I guess, an
independent person.
But once you do certain thingsor you achieve certain things,
you're like okay, well, now likehow much?
(40:52):
What else could I?
What more could I do and yousort of almost lose that part of
like that, what it feels liketo do something for the first
time or have that challenge.
So I guess that's what thesurgery felt like to me from
beginning to end.
You know I'm calling an Uber inthe morning and going to the
hospital, you know, the crack ofdawn and checking myself in.
It's like immediately they makeyou feel so supported and
(41:14):
taking care of at the hospital.
It's like you constantly aresurrounded by teams of people
looking out for you and Ithought everybody was so lovely
there and the day just felt likea dream.
That's why I called it a Grey'sAnatomy episode in the article,
because in my head I was likethat's what this is.
So I'm like I really did feellike a star, like getting wheels
out of the hall in my thing andeveryone trying to comfort me
(41:34):
and make me feel okay, asthey're like sticking it who
knows how long that needle iswith the nerve blocker into my
leg.
But I'm like, with all thatattention I felt great and you
know, I think then in theaftermath of it it was just sort
of finding a different strengththat you don't necessarily know
you have until you're facedwith a situation like that and I
(41:57):
think, instead of looking at itlike, oh, this is so hard or so
difficult or why did I do this,it was more the opposite.
It was like look how much I cando on my own and I'm doing this
all.
For in the back of my mind thewhole time was like this went
well.
And Dr Pfeffer told me that andlike I didn't know exactly what
I would walk like afterwards,but I knew it would be better,
(42:17):
hopefully, and any improvementat that stage was a plus for me
and was an advantage.
So I think keeping that in theback of my mind the whole time
made it feel that like every daywas worth it.
But I think it was just a newchallenge and a new way to sort
of prove to myself like, oh, Istill got it, I can still sort
of take care of myself.
Not that I didn't rely on peopleto bring me food or help me
(42:40):
into the bathtub when I firsttried, but eventually it's like
you get a routine down and yourealize sort of how much
strength you have I guess Notjust in a and it's ironic
because we're talking about thestrength of our foot and muscles
and walking and things likethat.
But I think it's like you kindof dig down for something deeper
as well and then you kind oflean on that throughout the
(43:01):
whole process.
So I think it was more proudthan anything.
Speaker 2 (43:06):
So I think people will really they already have.
I mean, your post is really.
It's probably the longest postwe've posted ever.
I'm sorry it's not short.
It has many pictures of howBecky looked before, after
surgery, the process of recovery, and you know, it's really even
(43:29):
if you're not consideringsurgery or thinking about
surgery.
Your story about you know,going from denial to acceptance
is really powerful and I thinkmany people who haven't read it
should and I hope you do so,becky.
What?
Because I'm just curious, and Iknow people are tell people
(43:49):
what you do quickly now so thatthey know if they are watching
show and they're like oh well, Iwonder what that woman who was
on in Breeze it with Lainey andEstella, I wonder where she
works now.
So where do you work and whatdo you?
Speaker 4 (44:03):
I'm the senior field producer at last week tonight
with John Oliver and this is myfifth season in New York.
Speaker 3 (44:09):
I love that you are able to kind of come full circle
now and approach your life withmore authenticity and just more
I can see you're just morecomfortable because I've been
there with you in certain stagesof your journey and we've met
up in the city and we've talkedabout this personally and you
(44:31):
just look lighter and you soundlighter and I think that's
really the underlying messagehere is that you know,
uncovering our truth andembracing our authenticity is
not like this linear, nicestraight path.
It is.
It's got its ups and its downsand sometimes you retract, you
go back and then you go forwardagain and it's got all these
(44:54):
loops and turns.
But at the end of the day, Ithink, if we still keep our eyes
on the prize which I think foryou at the beginning, you know
you knew right away that youwanted to become this person
that was comfortable in theirown skin and it was just a
matter of finding your own pathto becoming that person.
And you really just are abeautiful advocate for learning
(45:17):
how to advocate for ourselvesfirst, right Before we can
advocate for the disabilitycommunity or whatever disease
community at large, becausethat's the foundation that
you're gonna be able to buildthat muscle from.
Speaker 4 (45:30):
That's exactly right, and I think that's why I kept
flip-flopping with I want to bethere where you two were.
I looked up to you guys, so Imean I still do, but I think at
that first dinner I'll neverforget how powerful that was.
And I looked up to you guys andI was like I want to be like
them, I want to be able to betalking about this because
they're both so beautiful insideand out and are doing so much
and so smart and strong andambitious, and I would love to
(45:54):
use this for good too.
But I think the conflict I hadto deal with was like getting
there on my own first, before Iwas then ready to like actually
put myself out there in aneffective way.
And I'll just add that, like Ithink, with the confidence and
feeling lighter, I'm glad thatthat comes off, because that's
how I feel.
I do think surgery had a hugeimpact on that, not just because
(46:14):
it came out like, oh okay, Iwant better.
I think it was just the wholeprocess had had something to do
with that, and it gets me alittle bit closer to that 3.0,
as you mentioned earlier, laineyof not just being able to find
a way to talk about it in two tothree sentences, but actually
using it as a way that it sortof shapes me as a person.
(46:34):
That makes me more interesting,have more depth, I think, and I
guess that was perhaps why Ialso felt like I now reflect on.
Surgery is such a greatexperience, because I think that
was a big takeaway for me aswell.
Speaker 2 (46:47):
Becky, even though and, by the way, estelle and I
are so proud of you, but eventhough I am not like Claire
Royne, I don't know for sure Ihave this gut, this very strong
belief that you now is when youwill meet the perfect person for
you, because you are open andyou're authentically you and
you're taking care of yourself,and that's when that probably
(47:10):
will happen.
So I can't wait to hear aboutthat and I better be on the
cutting list.
That's all I got.
Thank you, I love you guys.
We're gonna spend what we tryto end with when we remember to
end this way, which is, we'dlike to ask you tell us what
embrace it means to you.
Speaker 4 (47:28):
Okay let me, I don't wanna jump the gun here.
I'm gonna think on it like aRuth Bader Ginsburg would.
I guess it kind of goes alongwith the theme of what this
podcast has covered, which isthe moment that I was fully able
to embrace it myself.
It's just incredible how mylife shifted and kind of opened
(47:52):
up again.
It's like for the longest timeI would say I want to be like
the old Becky that was just socomfortable in her skin and
would go anywhere and talk toanybody and there was really no
insecurity.
I guess Not that I was overlyconfident either, but it was.
I had.
(48:13):
Honestly, I'd never dealt withdepression before I'll just use
that as an example Whereas I hadsince then.
And the difference now is thatI don't want to go back to old
Becky.
I really like who I am todayand I really don't think I would
change it, which would havebeen very difficult for me to
have said, even maybe three orfour years ago.
I like how it's shaped me as aperson and make me have a
(48:37):
different perspective andunderstanding of other people,
whether it's CMT or somethingelse entirely, and I think all
of that has to do with justembracing it and accepting this
as part of who I am.
It's not all of who I am, butit's a part of me that I don't
have to be ashamed of and thatif I actually speak of it and
could put it out there in a waythat might be helpful or
(48:59):
effective for other people, thenthat's actually a pretty
amazing thing.
That makes me kind of proud, tobe honest, to be sitting here
with CMT, with you two, talkingabout major I don't know life.
Speaker 3 (49:16):
That is a that's an Emmy award winning answer right
there for TV producer.
Speaker 4 (49:21):
Oh my gosh, you're too fine.
It peered out.
I'm gonna listen back to thatand be like oh gosh, edit it.
Speaker 3 (49:26):
Nope, nope, we're gonna embrace all of it, every
imperfection, every misstepalong the way, and we really are
just so thrilled to see you inthis space, becky, and I'm
confident that, moving forward,that there will be lots of other
opportunities in our paths towork together, to partner
together, to align our missionstogether and empower the
(49:49):
community on each other.
So thank you for what you do.
Speaker 2 (49:52):
I know you're super busy, so thank you for coming on
and people, if you wanna get intouch with Becky, read her post
.
She's been commenting on allthe comments that are on the
post, so probably a great way toconnect and ask questions that
you might have.
Speaker 3 (50:09):
And one more thing.
I'm gonna share Dr Pepper'spage from the HNF website in the
show notes.
For anyone who would like tolearn more about Dr Pepper and
have a free virtual surgeryevaluation, feel free to visit
that page.
Speaker 4 (50:24):
Thank you both so much for having me and I'm sorry
I look like I just rolled outof bed.
Speaker 3 (50:29):
This is why we do a podcast.
Sweet, yes, all right, bye,guys, thank you.
Hey Embracers, thank you somuch for listening and
supporting the Embracid podcastBrought to you by Launchpad 516
Studios executive, produced byGeorge Andriopoulos and hosted
by Laini Ispia and Estella Hugo.
Our music and sound effects arelicensed through Epidemic Sound
(50:51):
.
Embracid is hosted withBuzzsprout.
Speaker 2 (50:53):
Do you have a disability related topic you'd
love for us to feature, or couldsomeone you know be a fabulous
guest on our show?
We would love to hear yourcomments and feature them on our
next podcast.
So leave us a voicemail or youcan even send us a text to
631-517-0066.
Speaker 3 (51:14):
Make sure to subscribe to this feed wherever
podcasts are available and leaveus a five star review on Apple
Podcasts while you're at it,follow us at Embracid underscore
podcast on Instagram and makesure to follow all the great
podcasts produced by Launchpad516 Studios.
Speaker 2 (51:30):
We hope you join us next time and continue to
embrace it.
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