Embrace It with Lainie & Estela - Smashing Disability Stigmas

Embrace It: Episode 51 - Becky Etchberger - From Denial to Acceptance

October 20, 2023 Season 2 Episode 51
Embrace It with Lainie & Estela - Smashing Disability Stigmas
Embrace It: Episode 51 - Becky Etchberger - From Denial to Acceptance
Show Notes Transcript Chapter Markers

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.

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



Support the show

Speaker 1:

Welcome to the Embrace it series, where women with all types of disabilities can be real, resourceful and stylish. With each episode, you'll walk or roll away with everyday tips, life hacks and success stories from community leaders and influencers. So take off your leg braces and stay a while with Lainey and Estella.

Speaker 3:

Hi, I'm Lainey and I have CMT. I'm a neuro-muscular disorder affecting approximately 2.6 million people worldwide.

Speaker 2:

That's as many as MS. We believe disabilities should never get in the way of looking or feeling good. Both of us wear leg braces and have learned through our own personal journeys to embrace it Brought to you by Launchpad 516 Studios.

Speaker 3:

each episode is designed to challenge your own stigmas and beliefs around disability. We want our listeners to get the most value for their time spent with us, so we interview some of the most empowering disability badasses in the world. Through storytelling, personal experiences and tips, we're all reminded of our own strengths and endless potential.

Speaker 2:

For more information and exclusive resources, check out our websites at trend-ablecom and hnf-curorg, and don't forget to hit the subscribe button for future episodes and special promos. Hi everyone, I want to well, estella, and I want to welcome you to another episode of Embrace it, and today. I know we start off every time saying we have a special guest, but this one is special to both Estella and I in a huge way, and I think many of you who listen here and we know we're all about you know all different types of disabilities and having influencers and people who are doing amazing things with all 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 story to share and you know she's also sort of like in the Hollywood world. Well, she is in the Hollywood world and has done really cool things which I'm going to let her tell you all about. I want to welcome Becky Edgeberger to Embrace it. Hi, becky, hi.

Speaker 4:

Thank you guys so much for having me. It's such an honor. It has been a journey both individually, but also with you two. I think from the moment I met you both, my own acceptance has gone up and down like a bit of a roller coaster. So it's nice to finally be on the other side and talk openly about everything with both of you.

Speaker 2:

When you and I first met Becky just to give people a little update I launched Trendable. Now it's been almost six years. Can you believe it? I mean crazy. So six years ago I put this website out to the world, had no idea what the response would be, and one of the first emails you know the month I launched it was from you and like in it it 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'd love to do something. I do a lot of dating or trying to date in the world of you know 20 something people. At the time you were in your 20s, right, and you were in the Hollywood world doing American. Were you doing American? I think it was American Idol, or you have just finished American Idol.

Speaker 4:

And I was. Yeah, I just finished American Idol and I was working at the Voice at the time, so my kids started jumping up and down.

Speaker 2:

They're like it was like as if you were like one of the main stars of one of those shows. They were like super excited and you wrote for me you know one of the best like blogs we have, 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. I'm trying to be more open and accepting and I'm learning about CMT and what I have. My mom really didn't talk about it much, but you know this is my attempt to like give back and fast forward. I don't know, I think it was maybe a year later, two years later, I don't know.

Speaker 4:

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:

When they Google me, not only do they see American Idol and the Voice and all the stuff 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 that before I tell them or feel like I want to tell them. So can you remove my name from the internet? How do I do that? And then I was like, oh my God, okay, and so fast forward and we're going to get to this. Just last week, becky wrote an amazing post about her experience and her life and we're going to link to it and about her experience having surgery recently for CMT with CMT, and you promised me in your beginning part I would not make you or ask you to take my name off of this.

Speaker 4:

But going back? No, going back, that's right. No, you've got to add to that. You've retold that perfectly.

Speaker 4:

And I think what I experienced was the difference between where I wanted to be and where I actually was. And I think in my mind I thought, of course, what a wonderful opportunity. I think when I saw your website, it was sort of this idea that I was like I mean, I can't say I thought it, but it felt like, oh, what a I relate to this moment, this woman that has CMT, this is a living with a real life, who wants to dress cute and not necessarily sacrifice fashion but also live her life, both socially and with the relationship, just confidently, and everything we would see when you Google CMT. It's like I can't identify with those women. And I think when I saw your website, I immediately identified with you and thought, yes, this, this is so important. But then when I, when we did post it and then it was put into practice, and then I experienced the reality of men telling me, which sounds ridiculous, it sounds a bit vain, I guess, to assume. I really don't think all men Google your name before first date, but it did happen more than once, so that was enough to scare. Can I swear? Okay, scare the shit out of me.

Speaker 4:

And I think my insecurity had not caught up to where I was hoping to be mentally, and so I was still. My gut reaction was just, can we bury this somewhere? I don't want this out there because I'd rather tell them myself, you know, and I just think I needed to get there on my own. But yes, coming around to I was like you're going to think I'm crazy.

Speaker 2:

But let me just say for any teenagers listening guess what? When you put your name to something and your face on the internet, you can remove names, but it's forever there. They will still link to you because your name was attached at one time. So you can never completely remove someone from anything you post. So please don't take a pictures and put it on the internet ever. A little public service message for those people.

Speaker 4:

Good luck then to learn. But yeah, I think at the beginning you were like okay, well, this sounds like a great idea. But just so you know, I don't think I can just post something with you know, an anonymous author, I don't know. I've thought about it long and hard and I am ready. I'm prepared, so attach away.

Speaker 2:

Yeah.

Speaker 3:

And you know, becky, and I too, I was there at that first meeting where I was also the first time I met Lani in person. So both of you, that night we connected in New York City and it was just I just remember feeling so energized to be at a table with women my age talking about CMT. That was never, that had never happened, other than you know me and my sister in my entire life. So I just remember that being a really, you know, special day.

Speaker 3:

And then fast forward. You know, in addition to the article that you were doing with Lani, we were excited to bring you in on H&F side too and see if we could merge your, you know, writing about dating with the CMT world and share a little bit in a video format, kind of a mini documentary that we put together for CMT called dateable and just you know, a quick little skit about a woman like yourself dating with disability out there and what that was like. Maybe you could give us like a little bit of a teaser, because we're going to put the film in the show notes, but tell us a little bit about what we ended up doing for that.

Speaker 4:

Yeah, that's right, gosh, that was right after I moved to New York, so it was such a whirlwind time and when I look back on that, I'm so proud that we managed to get that together and put it out there and attach it to that premiere of that documentary in time and impact, even from the people that saw it there, which was wonderful.

Speaker 4:

But I think it was really just trying to narrate the thought process that I tend to go through before First States and learning that perhaps I put so much pressure or emphasis on the CMT factor while not necessarily realizing that everybody sort of has an insecurity or something about them that they might immediately sort of have pop in their mind as soon as they're approaching a brand new person and trying to put themselves out there like, oh gosh, they're going to notice.

Speaker 4:

I think we went with, we decided not to go to disabilities, we decided to go with a guy that has a bald spot that's not necessarily visible in his photos or whatever, but what that feeling is like for that person too. Meanwhile, the whole time I'm driving myself absolutely insane trying to minimize my walk and if it does come up, how do I bring it up and how do I approach it what do I wear and where do we sit, and all of that and then cut to at the very end, revealing his own internal dialogue, which was like God, I hope she's cute, I hope she doesn't notice my bald spot, and it's like, I think, a lot of times when you just come down to that, like no one's really necessarily paying attention to the things that we tend to obsess about.

Speaker 3:

Yeah, I mean it was powerful and we definitely encourage everybody to check that out and you're right, it was. What was really intriguing for me was that it was that internal dialogue, that we think we're the only one with that internal dialogue but really everybody's walking around the earth with that. You wrote in your article with Laini a lot about your personal journey, accepting CMT and like coming out with CMT. What do you think were parts of your childhood that may have because you talk about? You know your mother's relationship to her CMT and how that affected you and I think that, again, that's so important to look at our family dynamics around disability and how they affect us and create those internal voices as we become adults.

Speaker 4:

Right, and I think that was something important to me with writing the article, because not to jump too far ahead, but I think initially bringing the idea to Lenny of like I want to tell the story of my surgery journey because it was so impactful, and it wasn't to tell it to be like, oh, look at all this big stuff I went through, because I didn't feel that way. I felt like this was such an incredible opportunity, an amazing ride, and I wanted to sort of put it out there, to be like you don't be intimidated by this process, because it was actually. I found it to be quite lovely and I learned so much about myself and surprised myself in a lot of ways. But to sit down and start at the surgery point felt like it's starting halfway through a movie and it was important to me and I began writing that backstory about my mother and I and communication and and we're lack of it growing up about CMT, because that was how I got to that place. And so I was like, even if we don't end up including this in the article, it felt that I needed to write that out for myself first to then get to that mental space where I was when I finally pursued the surgery aspect of it and I think that's also how I got to like contextualizing my mother's period in her life when she started showing symptoms in her late teens, early twenties, and what that was like for her, because it was so easy for me when my before I had CMT or before I had symptoms of it, or when they were still mild, to judge her for that or to be critical of it or to blame her. And I think when you take a step back you realize, oh, there's so much more to it.

Speaker 4:

The story is not that simple and really 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 going to talk about it. No one showed her how to talk to kids about it, so like, how would you know how to then discuss this with your own kids when they're going through similar experiences? And I think part of what I learned to was those early years that were so difficult emotionally and hard for me to understand that I was still a whole person and also still cool and still, you know it could be attractive regardless of this thing. It was I think I experienced it the same way that she probably did which was like, oh no, this makes me less than, or this makes me below average. We were so active and now I've lost that. How well, if I can't see myself as whole, how are other people going to see myself as whole?

Speaker 4:

So I started noticing that I was taking a very similar path and I, I guess I just I don't want to compare it to her because I think she's had she's through me and through me being so open about it eventually has sort of first forced the conversation there as well, which has been wonderful to see, because I think I realized I don't want to necessarily have this battle my whole life of worrying about this as more, of seeing it as more of a burden and not being able to talk about it openly because I can.

Speaker 4:

I see now how that not isn't necessarily health, healthy both for you and your relationships, and that was the other thing I put.

Speaker 4:

It definitely put up a wall between me and I would say I would say men and dating, because my friends of course were, and family except me for who I am, and a lot of times they would listen and identify with what I was, tried to identify with what I was going through. But at the same time I think it was harder for them because they're like, well, I don't, but you'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 to explain to me that like the same thing could happen with men of the work, with people of the opposite sex, but I could not for the longest time see that. And maybe that was physical, maybe part of that was, you know, my mother was a cheerleader and I was a dancer to cheerleader and we focus so much on like her physical selves that we kind of forget oh, there's this whole other aspect to human beings that goes beyond the physical.

Speaker 2:

Yeah, and my story you know, even though I love that. Estella said that when she met you and I for the first time. It's like she was like people, our age, but literally I'm 10 years older than Estella and probably I don't know 20 years older than you or something. So but my experience was similar because obviously you grew up like I did, where there wasn't internet and, you know, there weren't people that we could see, that looked like us, that your mom didn't have people.

Speaker 2:

My mom, who you know, you guys, most of you know, has CMT and is now deceased. She died literally three weeks after I launched the website, but she wasn't embarrassed, she just didn't talk about it ever. She just made it because my mom's disabilities were very visible. She had hands that were very much clenched in a fist. She had trouble getting in and out of a chair, pulling up hands, all of that stuff. So it wasn't like invisible, like my disabilities mostly are. So she was constantly encountering people who were like what's wrong with you? What's wrong with you? And my mom was just. She taught me indirectly like just 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 be like I was in a skiing accident and I was in this whatever. Because it was so much easier and because of the stigma that I know exists with you know, when you say you have something.

Speaker 2:

So you know, when you wrote that article about dating, I at that time I had I was married to Howard, but I had a short window of time when I was divorced and in the dating world again with leg braces for the first time, because when I was originally married to my kid's dad I did not wear leg braces. And I remember that gripping spear of like this guy seeing the leg braces, which meant like I'm never going to get into mimicking blood and because then they'll never see him right. So I remember that feeling of like oh, what if he touches my leg, like lower than you know my knee, like then he'll only see him. So, people who are listening, you know we were there, like I was there, becky was there, you were, you know, and it felt like it's it's so much better.

Speaker 2:

I don't know about you, becky, but like my life in general is so much better, just being direct and authentic and it's it's a saying of. I don't know if this is a saying or if it's just something I say, which is probably true, which is like, you know, the things you focus on, like when you focus on your CMT and whatever that's what people will focus on. But if you don't make it an issue and a bad way, then chances are the guy, the girl, whoever you're seeing, isn't going to make it a big deal either. You know that's.

Speaker 4:

That's that's perfectly said and I identify with that so much. And that was something that one of the many things my therapist worked on with me was was exactly what you just said she was. She helped me a lot to understand that, because at the time when I started seeing her and my motivation was twofold it was CMT and like my father had just died. So it was like enough, enough is enough. I guess it's finally time to listen to my friends and like, see somebody and and I understand 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 that that we tried to focus on. It was like how do you, as long as you see it as this big thing and it's the first thing about you when you walk in the door, or that's what you perceive that other people think about you? Then then the other people pick up on that energy, whether it's friends, family or potential relationships. And it took me a long time to break through that and it wasn't necessarily a linear progression. It was like some, some weeks or some dates were better and then I would slip back down and you would continually work on it. But eventually it was started this sort of steady decline. But you're absolutely right, it was like when I was finally able to get there and shift my perspective on it a little bit, and not that it's like okay, I don't have it, I'm going to ignore it or lie about it which I understand, that too, I've done that in the past as well but kind of find a different way to frame it.

Speaker 4:

And I think once I was able to do that for myself and then work that into conversations when it would come up it's two sentences max If I want it to be in. She opened. My therapist also taught me like I can drive that conversation. It doesn't have. I don't owe anybody any information.

Speaker 4:

I can share as much or as little as I want to about myself, but I can also say it without so many words of going into, like you know, a health, like a doctor exam on a first date. You don't have to do that either. But I overall, once I've shifted that perspective, I do feel so much lighter and like my life is so much better, because that's not the forefront of my focus with everything it's. It's amazing thing how much more honestly fulfilling my life is, but also how much more room there is for other stuff that actually matters. It's like that doesn't matter in 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 energy I waste on it. So maybe it would be best to try to minimize that a little bit and focus my energy elsewhere.

Speaker 2:

Yeah, yeah, you really did. The 2.0 version of coming out of denial and acceptance, and I would say the 3.0 version, which maybe this new post that you wrote will help you to get there, is not only not making your disability be a big deal and using it maybe as an excuse to not date, but then how about that? It gives you strengths that others might not have. That you see, that guy that you're meeting and you're like, oh, I have a disability and you frame it, which is true that this makes me like a catch, because I'm literally going to be the person who's going to be more sensitive, more aware when you dude get old, like I know, because I get it, like all of that. But your blog post, getting back to that which is, was amazing, your most recent one, which is, like as Estella said, all about your journey, starting with, you know, the messages you got growing up in your family and then to you today. You know, kind of give us, if you don't mind, like I guess, the abbreviated version of what happened, absolutely.

Speaker 4:

It's. It is funny that it starts out with shoes Like you look like wow, I thought everything was so hard. It was like I can't wear my four inch heels anymore. I had to downgrade to three. It's like now I have no platforms of any kind in my closet. But I say that with a smile on my face because I don't care anymore and that, I guess, is a wonderful feeling to see how far you've come and I, yeah, back then it started because I, because it was hard.

Speaker 4:

I was definitely not a place where it's open to talking about it. So the first concern was like oh gosh, yeah, what do I? I like to be stylish, I like to look nice. Plus, I'm only five three. I'm short. I'm like you know, putting myself on still so I'm. So I'm taller and had always had big calves, to the point where I used to think my calves were too big. It was hilarious, the things that we focus on.

Speaker 4:

But I think I guess the next big hurdle really was dating, because I was also newly single at that time. So I think it was also trying to navigate, you know, dating apps for the first time and actually being that person as an adult that goes out on dates with strangers and puts yourself out there repeatedly. I had never done that before in my life. Like college, I could care less and then dated two guys for four years back to back and didn't deal with this. So I think it was coming to terms with that, which is probably why that was at the forefront 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 into dating? And I think what I had to realize the hard way was that I was putting the car before the horse and I had to have that journey on my own before. You know, it's hard to say without sounding a bit cliche, but it was true. I had so far to go on my own before I was ever ready remotely ready to let somebody else come close, when I wasn't even able to kind of see that part of myself yet. It was one thing to talk about shoes, but it was another thing entirely to like accept that this is here to stay. It's probably going to get worse.

Speaker 4:

Tripping increases your sort of life quality. You have to shift some of the activities that you used to do and, yes, with work. It's like my job is on my feet, not necessarily every day, but such a big part of it is running around a set being in production and it doesn't slow down for anyone. So it's like how do I sort of merge the two and not just talk about it on dates anymore? But it became like how do I maybe comfortably talk about this at work? And because of the nature of my job I work directly on production, so I do tend to switch show every two years, three years. You know I've had some good runs with five years, including my current show.

Speaker 4:

But it's like every time when the CMT would get a little bit worse, it was like, hey, maybe I do have to address this, but you actually don't. It's like I guess it other people don't care, Like at last week tonight, no one ever asked me for the first year and a half that I was there about how I walk or am I okay on set. You know, nobody babied me. It was sort of like it's on my terms. But when it got to a point where it was like I wouldn't mind being a little bit vocal about it to say I, if I'm going to be on set all day, I need a chair, I need something to at least lean on in between. I need to go a little bit slower here. I need somebody to go do this other thing.

Speaker 4:

I was very aware of not wanting to put two. I'm certainly stubborn in that way, Like I want to do everything myself, but it does become empowering to also ask people for help when you need it, and I think the part about learning how to communicate effectively, both in with potential dates, but also at work and with that with anybody that might not understand exactly what it is, became a huge tool for me. That helped to my success there as well, because the same went at work. The more I was able to sort and not with it being this big health conversation. I'm just like oh yeah, I have a neurological disorder. It's a bit difficult for me. The muscles in my hands and feet are weak and balancing is hard, which I find myself always explaining the balance thing, because you don't see it. You see somebody, I guess, but you don't see that part, but it's like on set. That's something that's probably the hardest for me, and the more I would have about that, 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.

Speaker 4:

I guess the next step was dealing with it at work. And then I think, throughout the whole time just continuing therapy and trying to hold up that mirror and get a little bit more comfortable in my own skin. I think New York helped me in that way too, because I realized everybody has so much going on in their own lives that no one cares, no one's looking at me walking down the street. They all have plenty going on, and I just think I feel a lot like myself in this city as well, and that also added to my confidence. And so it all kind of worked together. And now I was still I don't want to say stubborn, but I think the way I framed it in the article was that I was, while I had made some mental progress, I did still at times struggle to accept that AFOs were the only option, that's it, nothing else, and you'll walk like this forever. So that's how I ended up continuing the research and finding Dr Pfeffer online and immediately recalled meeting him years ago when I was nowhere near considering surgery and kind of went down that rabbit hole and got obsessed with that, Not necessarily at that point for trying to achieve perfection physically.

Speaker 4:

I think I had finally gotten to a point where it was less about that and more about if I could improve my quality of life if I could walk just a little bit easier and make my life on set a little bit easier. I walk so much in the city Like that felt like reason enough. Like at that point I'm like I'm not trying to achieve like go back. I understand that I'm not going to go back to my pre-CMT body, but even if we get an incremental improvement, that seemed worth it to me. But I do think that emotional part was really necessary to get to before going that route. So I do think you have to be a bit emotionally strong to go through that process and be ready for it. You know.

Speaker 3:

We'll be right back.

Speaker 6:

This is George, fred and Jason, the co-leaders of Speak, interrupting to say that we hope you're enjoying this episode, but please make sure to check out our new show, the Speak Podcast, another great show produced by Launchpad 516 Studios. New episodes available every week on all of your favorite podcast platforms.

Speaker 5:

Each Speak Talk is about six to ten minutes in length, and the talks are given in storytelling formats. There are three key moments in each Speak Talk the moment of truth, the moment of transformation and the moment of impact. We host pop-up events all over the world, and now we're bringing our talks to your device.

Speaker 6:

Join us on the Speak Podcast as our speakers step onto the stage and into the spotlight with impactful ideas and stories.

Speaker 1:

We'll let you get back to the show you were listening to another great podcast from Launchpad 516 Studios.

Speaker 3:

You're tuning in to embrace it with Laini Anastella, brought to you by Launchpad 516 Studios. I think there's a lot of expectations there, especially with surgery, and you have to be realistic to some degree because, like you said, it's not a cure by any means, but it is meant to improve your quality of life and your function. I remember when I had my surgery, my surgeon promised me that I would never have to wear leg braces again At the age of 12, that was the most important thing in the world to me. Just to fit in, I took his word as absolute truth. Within a year I was wearing them again because I just realized I am. I feel like I'm walking in quicksand. Even after the surgery I was way better, my feet were straight, but I was just not functioning at the way I was.

Speaker 3:

For you to come to that place because I think, whether it's CMT or not, a lot of times the surgery or major life-interrupting treatment is a big decision we have to take a leap of faith that that is going to be something on the other side, even though it's going to be a really shitty situation for a while, that that's going to be what's best for us and that the risk is going to be worth it and that we need to come to a place where we need to put our life on hold, as I'm sure you had to experience putting your career such a busy and time-consuming and an energy-consuming career on hold, to put yourself first. Can you tell us a little bit about when you made that decision and you said it was such a positive experience for you in so many ways, I think?

Speaker 4:

also what helped, because it does require so much time away and away from work. It was important that I was able to even have those conversations. Before you bring up hey, by the way, I have this where do you even begin that conversation with your boss if they don't know anything about it? So I think, getting to the point where I was like I feel comfortable and open enough to be able to talk to them about this the people that I need to then I explained it and I think only to two or three people at work all of my bosses, and they couldn't have been more supportive and they were all like you can give as much or as little info as you want, don't feel that you have to, but if you would like to share, I would love to learn. I loved that because it made me. It was like they were taking a genuine interest in what I was, not just the dates of the surgery, but the why's and how it made me feel and what I was going through, and so I think all of that helped a lot.

Speaker 4:

But I will say I got I guess perhaps lucky is not the right word, because it was a pandemic and I realized that a lot of awful things happened during that time, but when it came to removing myself from day to day routine, I was working remotely already anyways, because it was 2020 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 into the beginning of next season, but we will most likely still be remote anyways. So hopefully it's okay. And when I brought it up, the response was well, you could tell. And I was like I'll wait until after a bit.

Speaker 4:

We did this huge finale shoot and it was really intense and crazy and I was like I'll wait until everything's done and wrapped up and schedule the surgery for, like immediately after that. And they were like you could tell us that there was only one time of year that they could do this surgery and it was at the busiest time and it would still be okay because your health comes first and that was the answer. So it sealed the deal and made the whole process, I guess, going into it easy, because it wasn't. I wasn't feeling stressed or anxious 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 that people have to consider.

Speaker 2:

I know people are listening and we are not. Estella and I, norbecky, none of us are doctors, none of us are CMT medically trained. We might know a lot but we are not. And also, I wanna also say that on hereditary neuropathy, hnf's website, which we're gonna put in the notes, they have a whole section on surgery and links to the surgeon so you can get your own virtual assessment whether or not you'd be a candidate, completely free. But, becky, what was it for those who are listening, who aren't gonna go to HNF and aren't gonna take time, is there like, how did you know you'd be a candidate? Like what was that In a quick thing, without being a doctor? People who are listening, I know I wouldn't be a candidate. I wear two leg braces. I've worn them for many years. There's no helping me to have by having surgery, like there's nothing that surgery would benefit me personally, like his surgery, but you were different, yeah no, that's a great question.

Speaker 4:

Honestly, I did not know if I was a candidate or not. I just in my head was, like I am going to do this, like I will do whatever it takes to get Dr Pepper to take a scalpel to my feet because he has magic hands. I didn't do anything. I also, look, I did have to manage my own expectations in that, which he is pretty clear with every interview.

Speaker 4:

I think he's done, and everything you'll find on the internet about him is that not everybody is a candidate, like you said. He will even tell you some people are better suited for braces and will be helped more with braces. Some people you know I think the most obvious ones are people that tend to walk on the outsides of the feet. He can help flatten that out, even if you do still need braces, so that one becomes most obvious. Now the other thing he looks for is having some strength and other tendons in your foot. So some may be weak, but you may have some others that still have a lot of strength and he's looking for those other strong tendons that he could potentially move to the top of your foot to then help it lift up, to help with foot drop.

Speaker 3:

So I think that's Because your surgery was a tendon transfer, which is another common CMT. But then of course there are reconstructive bone realignment surgeries. So that the we're talking, you needed to be at a certain level for the tendon transfer.

Speaker 4:

Exactly and we actually did both of those. So everybody that's the other thing. I guess it's a hard before you have a consultation or if you're out of state or out of the country. They have sort of a short list of videos to take of your foot feet so they can get an idea of how they move. And we did do a full reconstruction as well because my foot was not at 90 degrees, it was well below the 90 degree so he had to flatten it out in order for the tendon to even work.

Speaker 4:

But I think the normal, like some of the regular tendons that he's used to seeing, are if your foot can move strong either inward or outward. There's like a tendon that some people with CMT may not have the ability to lift the foot, but if they can return, like still can fully turn it to the left, fully turn to the right, those are like the top choices, I guess I would say for him. And then he's also, I think over the last five, six years, started doing the toe tendons as well. Some people still have strength in their toes and the ability to curl and flex them, and so those will even help or sometimes double up and add extra reinforcement. I didn't have any of those. All of the strength in those tendons that he would look for first were gone and that's why I had to be really persistent and some things they pushy, but I was just like in my mind. I was like he's my last hope for it. You know not braces, right, braces are in the other world and I still have A-fills and sometimes on set I still I wear them too because it helps my feet still get fatigued and at the end of the day they're not gonna lift as well as they were at the beginning of the day. But he eventually found that the when I pushed the ball of my foot down, so basically the ball, like just under the big toe, still had a lot of strength in it and it was not something that he was doing regularly.

Speaker 4:

It was a very rare surgery for him and I think that's why he had to wait on it a little bit and wanted me to try the braces first, to think on it, because he's also very careful. He won't necessarily let the patient decide oh, I'm a candidate for surgery, so you're gonna do because I'm Becky and I'm, you know, bossy, and gonna come in and be like look, I'm determined, you can do this for me. Whatever it is, it'll help. He's like not so fast, like I will not operate on people's feet, that I know I will not help, or that won't come out on the other side with an improvement, but you know, fast forward.

Speaker 4:

I went back to him again and again and eventually it's not that he caved because I was pushy, I joke but he did assign me braces and said you know you have to try it. I'm not gonna put a timeline on it, but you have to give it a try. And if it's still not right for you and you're still wanting to, you think you wanna pursue the surgery. Knowing you're kind of right on the line of where I would draw the candidacy for patients for surgery, then I'll leave that choice up to you. And that was huge because I did. I think I gave it about three months, but then I was like, yeah, no, let's do it. But he told me after surgery I'm so glad that you were persistent with me and that we did go through with it, because your surgery went so well that now I'm confident to do that on other people and other patients. And he performed another surgery, I think a month after mine, for this woman who flew down from Canada and did the exact same surgery on her that he did for me.

Speaker 3:

Wow, that's amazing.

Speaker 2:

So I also want to say, though, like before when I said I'm not a candidate, the big reason I wouldn't be a candidate personally is because back when I was a young kid, the protocol because I didn't know a lot about CMT was, even though I didn't fall yet, even though I didn't break ankles, they fused your feet back then, or some doctors. So both of my ankles are completely fused. I have no movement up and down or side by side, so that's why I personally wouldn't be a candidate and also, for those listening, that's also why some shoes 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 worry about falling down from a or rolling my ankles on a higher platform type shoe. So that's that. But, becky, your story is incredible and so interesting and really you're his like biggest fan. I see all over your. I'm gonna have like you should be paying you to. I'm a hero.

Speaker 3:

Yeah, yeah. You also mentioned that the recovery period after your surgery was positive in a lot of ways and life changing. Can you speak to why that was and what you kind of discovered more about your truth, or uncovered, during that time?

Speaker 4:

And I guess that that's another way in which I was lucky with this process because 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 for all people. So I don't wanna minimize that stress for people that cause I get an Airbnb is expensive, like flights are expensive, and it's not easy by any means. But I think because of the nature of that time period and working remote and I had a handful of people that were away so it was able to extend my stay there and stay at friends' apartments or whatever and have some help. So I don't wanna dismiss that aspect for people and I do feel that that worked in my favor as well to have a bit of a network in LA. But I think that's also why I felt so comfortable and empowered to go there alone and do the surgery alone, because I wasn't actually alone. I had plenty of friends around that were just a phone call away. But I guess I've always seen myself as, I guess, an independent person. But once you do certain things or you achieve certain things, you're like okay, well, now like how much? What else could I? What more could I do and you sort of almost lose that part of like that, what it feels like to do something for the first time or have that challenge. So I guess that's what the surgery felt like to me from beginning to end. You know I'm calling an Uber in the morning and going to the hospital, you know, the crack of dawn and checking myself in. It's like immediately they make you feel so supported and taking care of at the hospital. It's like you constantly are surrounded by teams of people looking out for you and I thought everybody was so lovely there and the day just felt like a dream. That's why I called it a Grey's Anatomy episode in the article, because in my head I was like that's what this is. So I'm like I really did feel like a star, like getting wheels out of the hall in my thing and everyone trying to comfort me and make me feel okay, as they're like sticking it who knows how long that needle is with the nerve blocker into my leg. But I'm like, with all that attention I felt great and you know, I think then in the aftermath of it it was just sort of finding a different strength that you don't necessarily know you have until you're faced with a situation like that and I think, instead of looking at it like, oh, this is so hard or so difficult or why did I do this, it was more the opposite.

Speaker 4:

It was like look how much I can do on my own and I'm doing this all. For in the back of my mind the whole time was like this went well. And Dr Pfeffer told me that and like I didn't know exactly what I would walk like afterwards, but I knew it would be better, hopefully, and any improvement at that stage was a plus for me and was an advantage. So I think keeping that in the back of my mind the whole time made it feel that like every day was worth it. But I think it was just a new challenge and a new way to sort of prove to myself like, oh, I still got it, I can still sort of take care of myself.

Speaker 4:

Not that I didn't rely on people to bring me food or help me into the bathtub when I first tried, but eventually it's like you get a routine down and you realize sort of how much strength you have I guess Not just in a and it's ironic because we're talking about the strength of our foot and muscles and walking and things like that. But I think it's like you kind of dig down for something deeper as well and then you kind of lean on that throughout the whole process. So I think it was more proud than anything.

Speaker 2:

So I think people will really they already have. I mean, your post is really. It's probably the longest post we've posted ever. I'm sorry it's not short. It has many pictures of how Becky looked before, after surgery, the process of recovery, and you know, it's really even if you're not considering surgery or thinking about surgery. Your story about you know, going from denial to acceptance is really powerful and I think many people who haven't read it should and I hope you do so, becky. What? Because I'm just curious, and I know people are tell people what you do quickly now so that they know if they are watching show and they're like oh well, I wonder what that woman who was on in Breeze it with Lainey and Estella, I wonder where she works now. So where do you work and what do you?

Speaker 4:

I'm the senior field producer at last week tonight with John Oliver and this is my fifth season in New York.

Speaker 3:

I love that you are able to kind of come full circle now and approach your life with more authenticity and just more I can see you're just more comfortable because I've been there with you in certain stages of your journey and we've met up in the city and we've talked about this personally and you just look lighter and you sound lighter and I think that's really the underlying message here is that you know, uncovering our truth and embracing our authenticity is not like this linear, nice straight path.

Speaker 3:

It is. It's got its ups and its downs and sometimes you retract, you go back and then you go forward again and it's got all these loops and turns. But at the end of the day, I think, if we still keep our eyes on the prize which I think for you at the beginning, you know you knew right away that you wanted to become this person that was comfortable in their own skin and it was just a matter of finding your own path to becoming that person. And you really just are a beautiful advocate for learning how to advocate for ourselves first, right Before we can advocate for the disability community or whatever disease community at large, because that's the foundation that you're gonna be able to build that muscle from.

Speaker 4:

That's exactly right, and I think that's why I kept flip-flopping with I want to be there where you two were. I looked up to you guys, so I mean I still do, but I think at that first dinner I'll never forget how powerful that was. And I looked up to you guys and I was like I want to be like them, I want to be able to be talking about this because they're both so beautiful inside and out and are doing so much and so smart and strong and ambitious, and I would love to use this for good too. But I think the conflict I had to deal with was like getting there on my own first, before I was then ready to like actually put myself out there in an effective way. And I'll just add that, like I think, with the confidence and feeling lighter, I'm glad that that comes off, because that's how I feel.

Speaker 4:

I do think surgery had a huge impact on that, not just because it came out like, oh okay, I want better. I think it was just the whole process had had something to do with that, and it gets me a little bit closer to that 3.0, as you mentioned earlier, lainey of not just being able to find a way to talk about it in two to three sentences, but actually using it as a way that it sort of shapes me as a person. That makes me more interesting, have more depth, I think, and I guess that was perhaps why I also felt like I now reflect on. Surgery is such a great experience, because I think that was a big takeaway for me as well.

Speaker 2:

Becky, even though and, by the way, estelle and I are so proud of you, but even though I am not like Claire Royne, I don't know for sure I have this gut, this very strong belief that you now is when you will meet the perfect person for you, because you are open and you're authentically you and you're taking care of yourself, and that's when that probably will happen. So I can't wait to hear about that and I better be on the cutting list.

Speaker 2:

That's all I got. Thank you, I love you guys. We're gonna spend what we try to end with when we remember to end this way, which is, we'd like to ask you tell us what embrace it means to you.

Speaker 4:

Okay let me, I don't wanna jump the gun here. I'm gonna think on it like a Ruth Bader Ginsburg would. I guess it kind of goes along with the theme of what this podcast has covered, which is the moment that I was fully able to embrace it myself. It's just incredible how my life shifted and kind of opened up again. It's like for the longest time I would say I want to be like the old Becky that was just so comfortable in her skin and would go anywhere and talk to anybody and there was really no insecurity. I guess Not that I was overly confident either, but it was. I had.

Speaker 4:

Honestly, I'd never dealt with depression before I'll just use that as an example Whereas I had since then. And the difference now is that I don't want to go back to old Becky. I really like who I am today and I really don't think I would change it, which would have been very difficult for me to have said, even maybe three or four years ago. I like how it's shaped me as a person and make me have a different perspective and understanding of other people, whether it's CMT or something else entirely, and I think all of that has to do with just embracing it and accepting this as part of who I am. It's not all of who I am, but it's a part of me that I don't have to be ashamed of and that if I actually speak of it and could put it out there in a way that might be helpful or effective for other people, then that's actually a pretty amazing thing. That makes me kind of proud, to be honest, to be sitting here with CMT, with you two, talking about major I don't know life.

Speaker 3:

That is a that's an Emmy award winning answer right there for TV producer.

Speaker 4:

Oh my gosh, you're too fine. It peered out. I'm gonna listen back to that and be like oh gosh, edit it.

Speaker 3:

Nope, nope, we're gonna embrace all of it, every imperfection, every misstep along the way, and we really are just so thrilled to see you in this space, becky, and I'm confident that, moving forward, that there will be lots of other opportunities in our paths to work together, to partner together, to align our missions together and empower the community on each other. So thank you for what you do.

Speaker 2:

I know you're super busy, so thank you for coming on and people, if you wanna get in touch with Becky, read her post. She's been commenting on all the comments that are on the post, so probably a great way to connect and ask questions that you might have.

Speaker 3:

And one more thing. I'm gonna share Dr Pepper's page from the HNF website in the show notes. For anyone who would like to learn more about Dr Pepper and have a free virtual surgery evaluation, feel free to visit that page.

Speaker 4:

Thank you both so much for having me and I'm sorry I look like I just rolled out of bed.

Speaker 3:

This is why we do a podcast. Sweet, yes, all right, bye, guys, thank you. Hey Embracers, thank you so much for listening and supporting the Embracid podcast Brought to you by Launchpad 516 Studios executive, produced by George Andriopoulos and hosted by Laini Ispia and Estella Hugo. Our music and sound effects are licensed through Epidemic Sound. Embracid is hosted with Buzzsprout.

Speaker 2:

Do you have a disability related topic you'd love for us to feature, or could someone you know be a fabulous guest on our show? We would love to hear your comments and feature them on our next podcast. So leave us a voicemail or you can even send us a text to 631-517-0066.

Speaker 3:

Make sure to subscribe to this feed wherever podcasts are available and leave us a five star review on Apple Podcasts while you're at it, follow us at Embracid underscore podcast on Instagram and make sure to follow all the great podcasts produced by Launchpad 516 Studios.

Speaker 2:

We hope you join us next time and continue to embrace it.

Embrace It
Exploring Dating With Disabilities and Self-Acceptance
The Impact of CMT on Relationships
Overcoming Challenges and Shifting Perspectives
Tripping and Overcoming Challenges in Life
Surgery for CMT Treatment Experiences
Embracing Identity and Overcoming Challenges