Stronger Together with Megan Gaydosh and Tiffany Kerchner

myFace, myStory

On this month's myFace, myStory podcast episode, host Dina Zuckerberg brings you an inspiring conversation with Megan Gaydosh and Tiffany Kerchner. Both Megan and Tiffany have turned their personal experiences with facial differences into powerful advocacy work, promoting self-love, acceptance, and awareness. Together, they discuss the importance of visibility, advocacy, and support for those with facial differences and disabilities. Their stories highlight the strength found in community and the transformative power of embracing one's uniqueness. Tune in for an insightful and uplifting episode that celebrates resilience, courage, and the belief that we are truly stronger together.

- [Announcer] Welcome to "myFace, myStory: "Voices from the craniofacial community." With your host, Dina Zuckerberg.

- Hello, and welcome to "myFace, myStory: "Voices from the craniofacial community." Whether you're watching on YouTube or listening on Apple Podcasts, click subscribe now so that you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcasts so that we can get a message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. Today, I will be joined by Megan Gaydosh and Tiffany Kerchner. Megan, a former special education teacher, is now a birth doer. She loves to sing and write song parodies to inspire self-love and acceptance. She was born missing the seventh cranial nerve on her left side. While having a facial difference once held her back for pursuing her dream of becoming a singer and actress, she now confidently affirms that anything is possible and that differences only make us more of who we are. Tiffany is a nurse by day and a facial difference advocate on social media. She uses her platform to educate and spread awareness for the social injustices that her facial difference community faces every day. She was born with a rare neurological disorder called Moebius syndrome, which causes the right side of her face to be completely paralyzed. In her spare time, she enjoys reading, hanging out with her dog and cat, and tending to her houseplants. She believes it's time to break beauty standards and showcase more individual with physical differences, disabilities, and other medical complexities. Welcome, Megan and Tiffany. I really look forward to our conversation.

- Hi, so happy to be here.

- Yeah.

- Hi, thanks for having me.

- Yeah, so let's get started. Megan, can you share a bit of your personal journey of growing up with a facial difference?

- Yeah, like you said, born paralyzed on my left side, missing a facial nerve. And it was always something that I felt needed to be fixed or was always hoping for some surgery or something that would make me feel and look normal. And in my teens, I did have a two-part nerve graft surgery where I did get some more movement on my left side. But I found that even having surgeries that still was not going to look like most people, and that even having those surgeries brought more questions and comments about scars and how long is it gonna take to smile normally and just kind of added some extra layers of insecurity, actually. But I'm glad that I did it because I think I probably would have wondered what if, if not. But I think in realizing that my face is going to be different for my whole life, it felt kind of crushing in my teen years and then into my like adult years, making connections with my family and with other people with facial differences and finding that community and seeing them as so beautiful helped me be able to then see that in myself and just sort of completely reframed how I see my difference. Like now I feel like it's kind of like a superpower, like I can make a difference with my difference instead of feeling less than because of it.

- It is freeing, right? I mean, when you can just be out there and sharing who you are without needing to hide it or being uncomfortable with it. And I think it's definitely a journey. So Tiffany, I imagine you can relate some and can you share with us your personal journey?

- I feel like I should be talking about how traumatic my childhood was because there is the trauma of being hospitalized frequently. There is the trauma of the negative stigma against us and going out in public and then being bullied in school. But I was a pretty happy child despite everything. I think between the ages of two and 16, I had 13 surgeries. Despite all of that, I was still happy and I did still as happy as I was, I did have that shame about my appearance. I started growing my hair out and I started wearing it a certain way so that it wasn't as visible when I was out in public. And like Megan said, I would hope and pray like one day I'd get a phone call like, "Hey, we're gonna do the surgery "and you're gonna look like everybody else." And that day never came. And I carried that shame with me. And I think just when I started getting like more onto social media and I started seeing more people with facial differences and I'd be looking at them and I'm like, "Wow, they're so beautiful. "Like look at that woman, she's so beautiful." And then one day it clicked and it's like, "Well, if she's beautiful with a facial difference, "why can't I be beautiful with a facial difference?" And then I just started seeing my difference as this, I almost feel like it's a gift because it's made me the person I am. And it's given me this community of people. It's given me a lot.

- I always say it, right? There's power in the share story and knowing you're not alone. And when you find that community, it really does make a big difference to realize, "Wait, I'm not the only one that felt that way. "I'm not the only one that thinks this way."

- Yes.

- So Tiffany, why did you want to become a nurse?

- As I said, I spent a lot of time in hospitals, in doctor's offices. When I'd have surgery, I'd spend a couple of days up to like weeks at a time in the hospital recovering. And some of my surgeries, I would have drainage tubes coming out of my head and face area or wherever they operated on. And it would just make my hair this like matted mess and just from laying in the hospital bed. And it was the day I was being discharged and I had my nurse and her name, I still remember her name was Brittany and she was wearing a butterfly on her shirt. And I will never forget her. She came in to go over the discharge paperwork with my parents. And then she said to me, "Why don't we go take a shower "and I'm gonna fix your hair "so you can look really pretty to go home." And she washed my hair and she put my hair in braids. And I was like, wow, like she didn't have to do that. Like I know how busy her job is. I know she has more important things to do yet she took 20 minutes out of her day to make me feel good. And that really inspired me to want to do the same thing for other people.

- Megan, I know you were a special education teacher and now you are a doer. If, I don't know if it did, but did your facial difference influence your choices?

- Yes, because I really wanted to empower kids with disabilities. And it was sort of in that job where I did kind of start to make the shift of like, 'cause I would talk to my students and tell them, anything is possible. You can do anything. I would like show them slideshows of different people with disabilities who are famous. We would have these conversations of like, you can do anything that you want to do. And then I would kind of internalize that and be like, why can't I tell that to myself? 'Cause I definitely haven't done the things that I wanted to do, because I felt like that was not possible looking the way that I look, to audition for something or to put myself on stage. It was just always so terrifying. So I feel like in special education, it kind of helped me send that message to myself. And I did really, really love being a special education teacher. And then I just had my own children and found I did not have the time. I didn't feel like I could do both well or have patience for my own kids at the end of the day. And so that's kind of how I shifted to the doula role, because no matter how many babies I have, I will have baby fever. And it kind of helps me get the baby fixed. And in giving birth to myself and being postpartum, I really thought that I knew what to expect and realized I had no idea. And just wanted to help other women have an easier time through that process.

- How did your journeys lead you to become advocates now? And was there someone or something that inspired you to want to share your story and messages with others?

- Started for me on TikTok. It was about three years ago. And I was just scrolling, staying up late. And I just thought, there really is something for everybody here. I wonder if they're, I just searched facial paralysis, facial differences, and I just found multiple people in the community. And I just had this big aha moment of like, okay, these are my people, I want to join them, I want to do this too. And then yeah, the next day, I just started posting about my story. And I had posted before, but nothing about my face or my story of living with a facial difference. And yeah, finding that community kind of made it feel like a safer space, like I wasn't alone. Even if it didn't go well, I had these people in my corner. And the more I've done it, the more connections I've made. And like Tiffany, it's one of my, we call each other soul sisters. Because we have just so much in common and can relate to so much with each other. And yeah, it's just really cool to feel like you have this whole community supporting you.

- And Tiffany, did you have anybody who inspired you or what made you decide that you wanted to do that?

- I did have somebody who inspired me and her name is Megan Gaydosh actually. Similar kind of story, I had been, I think I joined Facebook in like 2007 when Facebook came out. And then when Instagram came out, I joined Instagram and I was posting, mostly just like my personal life, like pictures of going out with friends. And then I started learning more, like if you want to get more followers, you should post about like the same, one thing. And it's like, okay, so should I post about my plants? Should I post about reading books? Because I read a lot of books. It's like, yeah, I could do that. And it's like, but there's a lot of those out there. And then the same thing, I joined TikTok, I think in the pandemic, I think when everybody did. And I remember like, I was just scrolling on and Megan comes on and she was doing a parody of a Megan Trainor song. And I was like, oh my God, this is awesome. And I was like, wow, like people are making videos about their facial difference. And I'm like, this is it. Like, this is what I need to do. Like, what better for me to talk about than my life? And so then I started making videos and people started commenting like, yes, this is so relatable. And it's like, oh my gosh, yeah, like this is what I need to do.

- I feel like you both by doing that, you give voice to others to feel that they can also share. I mean, look at the two of you, right? Megan did that and then Tiffany, you're like, oh, I can do that too, so.

- Yeah, I hope so, yeah.

- And can I just also say that I didn't have, well, you're somewhat younger than I, that I didn't have nearly that confidence or desire to do that at your age. Of course, I didn't have social media then either, so. So what are some of the social injustices you have encountered and how have you addressed them?

- There's just such a stigma around facial differences between the media and then that translates into real life. I was called two-faced in school and deformed girl and constantly reminded that my difference was something to be mocked or something undesirable. And even just going out with friends, we went to a makeup counter at the mall once and everybody was getting their makeup done and she didn't wanna, she wouldn't do my makeup 'cause she was worried about my eye, I can't close my eye all the way. And that was just, as a preteen, going out with your friends and then just, it was so humiliating and I felt very discouraged from makeup at that point and was like, oh, maybe I shouldn't do this. Finding other people in the community wearing lipstick and emphasizing their differences. I always stayed away from anything that would highlight it and different, like Naomi, different creators who have all these amazing skills. I was like, okay, actually, I am gonna wear the lipstick. I am gonna do my makeup how I want but it's just like the injustice is everywhere all the time. Majority in the media and I think that's the biggest thing that we are trying to fight against is like, yeah, having a facial difference doesn't... We're just like normal people, you know? Can we just not see any more villains?

- Right.

- And like, yeah, or like a pity story or yeah. We just need more representation and inclusion to just show us who we are.

- Absolutely, I can totally relate by the way to wearing makeup and always feeling like that it's accentuated my differences. And I just believe it or not, just starting to get much more comfortable with it and having Naomi and for those who don't know, Naomi is a makeup artist and photographer also born with a facial difference and having Naomi do my makeup recently has, and then looking at it and going, wow, like so beautiful. But like, I never felt that comfortable with it. So yeah, it's definitely something that it's grown on me to realize that I can wear makeup. And one of the things is always my lips. Like I feel like if I accentuate my lips then people will see the scar.

- Yeah, I mean, there's a lot of social injustices I think that come along with having a facial difference. Everywhere you go, you get stared at. It just feels like I can't go anywhere without people staring at me. And it's like, oh my gosh, like I just wanna go grocery shopping one time and not have everybody staring. And I feel like I also didn't get jobs that I was more than qualified for. And I was actually told during an interview that you're very qualified that you don't have the look that we're going for.

- Wow.

- And it's funny because at the time I didn't even think anything of it. I was just like, okay, like maybe they wanted a blonde person like maybe they wanted a blonde girl, but I was like, all right, maybe it's my curly hair. I don't know. And then later on I was like, oh, it's because of my facial difference. And yeah, like Megan said, being portrayed in the media as villains, as the outcast, like the Quasimodos, the Freddy Kruegers, it just adds to that negative stigma. And it's why children I feel like are scared when they see people like us because that's just the norm in our society. And it just needs to stop. They need new ideas.

- So I know this is a big question. So what do you think we can do to change it, to improve it, to shift the way we think about these things?

- I mean, I think we're doing it. I feel like we're in a point of change, like little steps forward, which then can sometimes feel like we're taking steps back when we see facial differences portrayed in that way again. But I think everybody advocating is what's going to bring change. Like the more people that call it out and say, "Hey, actually, this is very harmful to those of us living with facial differences." And I do feel like, even with Disney, including in their show "Firebuds," the character with the cleft lip, little things like that are starting to become, I think, more accepted. And what I think is so cool about that is that character in the show is just a character. It's not emphasized that they have a cleft. It's just, this is a person that exists in the world. And I think the more that we see that, and it's not like, "Wow, look at what they can do even though they look like this." And it's just, "This is just a person living their life, hanging out with their friends, doing normal things." It is such a small piece of who we are, and there's so much more to tell. And I think we're heading in that direction, hopefully, little by little.

- Absolutely. It is a slow process for sure. But I do, I feel like it's happening. There's things that are happening.

- I agree. I think it would be awesome to see a movie where the main character has a facial difference, but it's a romance movie. And it's not about her having a facial difference. It's just, she just happens to have a facial difference and she's in this romance. And I think that it needs to start, like the education needs to start when there's babies and there's children and they need to be educated. Like, "Hey, there's people out there that look differently. There's people out there that have disabilities. There's people out there in wheelchairs. There's people out there that use walking aids." And maybe making, I've seen more toys out more recently than like when I was a child. Like I've seen dolls that are in a wheelchair. And I think like that is definitely a great step forward because it gets the kids like thinking. And then once they encounter somebody in real life, it's not like a shock. It's like, "Okay, I know all about this." And there's several children's books out there. I think that's the right step is to start teaching the little ones.

- And I always, when I talk to the kids, I think about that a lot when I go into schools and getting them when they're young because then it's like, "Oh, it's no big deal." It's just, that's a part of who somebody is. Just like somebody has glasses or they have whatever it is. And I also love seeing when they wake up to realize, "Oh, wait, somebody else has hearing aids like I do. Oh, that is so cool." That too. And so I think getting kids, I agree, getting them at a young age to be exposed to all kinds of differences just helps put everybody in some ways on an even playing field. It's just like we all have differences. And I always emphasize that too, that we all have differences.

- Right.

- And how boring the world would be if we were all the same. To our audience, I hope that you're enjoying this episode of "myFace, myStory." Whether it's your first time joining us or you've been with us since the beginning, make sure you subscribe to our YouTube and Apple podcast channels and sign up for our mailing list at myface.org/mystory. Can you each share a particularly impactful moment or story from your journey as an advocate?

- Probably connecting with myFace is like kind of the first time that I got to see people in person that looked like me or that just got it, you know? And there's just something so healing and comforting and just exciting about getting to be with people for the first time that really understand you in kind of this unspoken even way. And yeah, getting to participate in myFace Celebrates last year and then again this year. But last year was my first time getting to be in person with people with facial differences. And it can feel very isolating and kind of lonely when you don't have those relationships. And so even though it's nice to have it from afar and talk to those people to be in person is just such a gift. And yeah, so I thank myFace for that.

- And what was it like for both of you to get up on stage and perform at myFace Celebrates?

- Amazing.

- It was, it was, yeah. I used to, I did a lot of performing as a child. I was actually involved in the choirs and I did dance and after high school that stopped and I wasn't performing on stage anymore. But so it took me back to that and it was, I was nervous, but it was so incredible. Like Megan said, just making those connections, knowing that this person knows what it's like, they get it. And just to be able to do that and maybe show other people like, "Hey, I can do this too. If she can do it, why can't I?"

- So what advice do you have for parents who've just learned that their child has a facial difference? Tiffany?

- I would say, don't get all hung up on the comments that you see on people's, 'cause I know, I've heard from other parents that when they first learned about their child's condition, they went on the internet, of course, to research and then they found social media accounts of people maybe that have that same condition and the comments that people leave are just awful and that's putting it nicely. And I think just, as hard as it is to just kind of brush it off, 'cause it is hard, find that, try to find that community, try to find that us, like those of us that notice, like, "Oh, we will support you." And make connections with organizations like this and I think that's what I'm trying to do with myFace. I think that having that connection is gonna make a world of difference.

- In what ways do you think society can better support individuals with facial differences and promote inclusivity?

- I think that kind of goes back to like, a combination of showing kids differences, making that just normalized, and like in all children's books and shows and so that it's more accepted and not like this mystery, the curiosity is kind of, like I understand we're, as humans, we're curious, but the more that kids are exposed to these things at home and not just out in the world, it can reduce the stares and questions and things like that. And then hopefully translate also to the media to just also represent people with differences in that way as well, to just normalize it and make it, like the more representation there is, the more normalized it becomes, the less stigmas we have attached and hopefully younger generations with facial differences will have an easier time accepting themselves and feeling confident to just be who they are. You know? Yeah.

- So Tiffany, I was just thinking, when a parent is out with a child and another child says something, so your child says something about somebody who has a facial difference or any difference, how or what do you think a parent should do or say to help facilitate that conversation or that? Because I think what I hear too often is parents saying, shh, don't say that, you shouldn't do that. And what that does is almost creates a negative response. So what do you think a parent should do or say to help that?

- Yes, I agree with that. And that's the same experiences that I've had is, you know, you hear, shh, don't say that, don't stare. It's not nice to stare. And I agree. I think that that does make it a negative impact on the child 'cause now the child is afraid they're gonna get in trouble.

- Right.

- And when really they're just curious. And yeah, I think the dialogue needs to start at home and it needs to start putting that idea in their brain. And I think it's like when children ask me, I always say something kind of like, well, you know how like some people have blonde hair and some people have dark hair or some people are born with maybe nine fingers instead of 10. And then I say like, I was born with, and I tell them about Moebius syndrome and what it is. And I just am like straightforward with them. And I think that's a great way for parents to address the situation. And I always recommend the book "Wonder" of course, 'cause I know the author wrote that book because she had that exact situation where she almost like shushed her child and told him not to stare. And then she realized after the fact that that was not the right way to approach that situation.

- Yeah, I mean, as a parent, I think, like I understand the, I think they're embarrassed, you know, I understand that desire to just be like, stop, stop, stop. But then, you know, also being somebody with a difference. I think it's just, you know, say hi. Like, you know, like, yeah, aren't they, yeah, aren't they pretty? Or like, yeah, you wanna talk to them?

- Yeah, I agree with that.

- Not to make it seem like, don't look at them, don't ask questions. But that's also why I think it's so important to just do that, as much exposure to differences at home as possible so that there's less of that when you're out in the world. Like my kids have so many books on differences. And so when we do see things out there, like, you know, my six-year-old just commented like, they have a facial difference, you know? I'm like, yeah, isn't that cool? So just, yeah, just humanizing it, understanding that kids are gonna be curious and that's okay and it probably is gonna make the person feel more uncomfortable to like shush them and make it seem like they're not there than to just like acknowledge them. Like I used to, when people would stare at me when I was younger, like I would just stare back, to try to make them feel as awkward as it felt for me. And then as I got older, when that would happen, I'd just like smile and wave. Try to realize that that probably wasn't the best tactic, even though it felt like, oh, you wanna stare at me? You see how it feels, but just smiling, saying hi. And then they usually smile back and then it's fine.

- And I remember just walking away or wanting to turn away and not answer them and then as I got older, especially now, even with little kids 'cause I realize that they still stare, they notice. And like you, Megan, I'll just turn and smile and say hello and sometimes that's just okay, that works. So if you could give one piece of advice to your younger self, what would it be and why?

- That's a great question. I think I would tell her to learn how to love yourself, to make time to do things that make you happy because, you know, you can't control what other people say or do. And I truly believe that if you love yourself and if you embrace yourself and your difference that it doesn't matter what anybody says because that's just, you know, people have their own opinions based on their own perceptions of things they've experienced in their own life. And yeah, I think like once you learn to love yourself, it's just what other people say about you doesn't really matter.

- Yeah, I would tell little me that nothing about you needs to change for you to love yourself and to pursue the things that you wanna do. But yeah, you are perfect just as you are.

- Yes.

- Go get 'em.

- Yes.

- So who do you see when you look in the mirror today?

- Badass.

- Love it.

- Yeah, yeah, I see a warrior. I see somebody who's fought many battles and yet I'm still here and I'm still trying to make the world a kinder place.

- Love it. So thank you, Megan and Tiffany. You both are so beautiful and your beauty shines through. I am so grateful to have advocates out there like the two of you because I didn't have, as I mentioned earlier, half the courage to advocate for others when I was younger. So there's no doubt in my mind that you are impacting so many lives, including mine. And so thank you again for sharing your journeys with us.

- Thank you.

- Yes.

- Likewise.

- Yeah.

- Dina, you are making a lot of change now. So even if you didn't have that when you were younger, you're making up for it now.

- Thank you. I'm trying.

- Yes, I agree with Megan, yes. Thank you, thank you for having me and you are such an inspiration to me too, Dina, because I see you doing things and I'm just like, that's amazing. So thank you for being you.

- Thank you. Now I'm gonna get teary eyed.

- Big love fest.

- Thank you. Bye. Megan and Tiffany are an inspiration to me and everyone they meet. Everyone has a story and I'm hopeful that by sharing stories like these, we can create a kinder world. For more than 70 years, myFace has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic comprehensive care, education, resources and support that paves the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the myFace support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to myFace, myStory on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "myFace, myStory." Remember, it takes courage to share your story. So be brave and speak out.