On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Chelsey Peat, born with Sturge-Weber Syndrome, and recently published author of her memoir, Two Sides to a Face. She will share her journey from childhood, marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial differences community. She hopes to serve as a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized due to their physical appearance. - [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." I'm Dina Zuckerberg, your host and Director of Family Programs at myFace. Like many of you listening, I have a craniofacial difference. 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. By the way, whether you're watching on YouTube or listening through Apple Podcasts, quick subscribe now, and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "myFace, myStory," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Chelsey Peat. Chelsey was born with Sturge-Weber syndrome, a rare condition that led to multiple surgeries, including a lifesaving brain surgery as an infant. Despite doctors predicting significant limitations, Chelsey has defied these expectations throughout her life. She graduated from high school and college, and she's currently pursuing a degree in sociology, alongside a certificate in diversity, equity, and inclusion. With nearly 40 years of personal experience living with a facial difference, Chelsey has faced and overcome numerous challenges, including discrimination and stigmatization. Her deep understanding of these issues is reflected in her work with various organizations where she educates and advocates for individuals with facial disfigurements, differences and disabilities. Chelsey's debut publication, "Two Sides of a Face," offers an inspirational narrative of her life. This memoir details her journey from childhood marked by curiosity and challenges due to her condition, to her current achievements and advocacy work within the facial difference community. The book explores themes of self-acceptance, self-love and resilience, highlighting pivotal moments that shaped her identity and empowered her to embrace her imperfections. Through personal anecdotes and her role as a mentor and public speaker, Chelsey's story in "Two Sides of a Face" is not just about overcoming facial differences, but about transforming adversity into advocacy. Welcome, Chelsey. I really look forward to our conversation. - Hi. - Hi. So glad you can join me today. - Thanks for having me. - You're welcome. So can you share with us the moment you first realized that your facial difference would significantly impact your life? - I wouldn't say it was an exact experience. Growing up, I think everyone that grows up with a facial difference, you kind of just, you know that you're different once you're old enough to just, you just know. - Right. - But definitely going to school and those younger years, there was definitely times where for sure there were the points, the whispers, the stares, the awkward moments, you know, awkward conversations with grownups, noticing people looking a little too long, you know, all those awkward. Yeah, those moments where it was just less than respectful. - Yes. I can relate to that somewhat. So for those that don't know in our audience, can you tell us about Sturge-Weber syndrome and how rare it is? If you know. - Of course. Sturge-Weber syndrome happens approximately one in 50,000. Now kids nowadays can, I think it's one in 10, can be born with a birthmark of some kind. But Sturge-Weber syndrome is far more complex. Everyone always kind of takes notes when you say syndrome, and they automatically assume that that means we have some sort of disability or learning development, when that's not the case. It just means syndrome multisystem. So I don't have a regular birth mark. I have a hemangioma or port-wine stain. It goes far beneath the surface of the skin. And it interplays with blood vessel involvement through all the crucial organs and tissue on, for example, with me, in my eye, my brain, throat, sinus passages, ear canals, all that fun stuff. - Wow. - Yeah. - I did not know that. So how many surgeries have you had? - Well I had my one major brain surgery as a baby. I have had multiple eye surgeries for the glaucoma in my left eye, and I have had, oh, probably close to 100 cosmetic procedures on the birthmark. - Wow. So what is the most challenging thing growing up for you? What was the most challenging? - Trying to fit in, trying to make a friend, trying to have that inclusive aspect, you know. We, of course, at least for myself, you know, we were growing up having shows tell us, you know, everyone, if you look alike, you get along. And knowing, you know, that was never going to be possible for someone like me. It was kind of growing up realizing I wasn't gonna be that sweet princess that gets her prince, like all the movies told me that I should be. If I'm pretty, I'll get that magical kiss and I'll get my happily ever after. And you know, it's that instead you're siding with the bad guys in the movies because you understand their tragic backstory. You know, you kinda understand the whole aspect of everyone, all the Disney characters that were getting pushed to the shadows or, you know, sent to the outcast, you know, aspect. It was, yeah, you connected more with that. And I found myself, you know, "Phantom of the Opera," "Hunchback of Notre Dame," anybody with a scar or a burn, you know, I didn't like the heroes in most movies because I thought they were just self-entitled, you know, pretty people. - Right. Right. - It was, you know, more of those, oh my goodness, that poor person, you know, they went through this horrific thing. Well, they're the bad guy because they look different. So I must be a bad guy. I must be a villain. And yeah, it was having to try and break free of that. - So how did all of that impact your self-identity, self-esteem, especially as a teenager? 'Cause that can be really hard, right? I mean, for anybody, but especially with a social difference. - Yeah. The teen years were hard. I can definitely agree there. It was, you know, I tell a lot of people that's probably the hardest battle, especially for someone with a different or of disability, is the battle of self love. You know, you're basically every day getting up out of bed and being told by the world around you that you don't belong, you will never succeed, you aren't pretty, you know, things won't come easy. And it's trying to kind of break apart from all of that, push it all away and go, actually I'm not normal, yes, but my journey is gonna be far more exciting. So it was kind of that aspect of self-love and going, I get to have a far more exciting journey. It's not going to be like everyone else's. Instead I get to do things I know for a fact people look at me at awe with and go, "Wow." And, you know, using that more as motivation than you're a scary monster go away. - So do you have a specific example of a story where you felt especially isolated or misunderstood? - I can definitely, I can think of several, but I know for me, one bad example was, I grew up just perfectly, elementary school started one year and I'd already been struggling a little bit with bullying. And unfortunately a Batman movie got released. And it just so timed, yeah, it just so timed perfectly that the bad guy was the infamous acid-burn survivor Two-Face. - Oh wow. - And I remember the previews. I remember looking at him and connecting with him on a level, going, "I look like him. This is exciting." But then realizing that's not a good thing. And having the kids at school, the ones that had gone and seen the movie, you know, run up and start calling me that and with fingers and, "She's so bad." You know, "Oh, where's Batman?" And having that whole negative aspect of, "Yeah, you're the bad guy, we don't wanna play with you." And, you know, struggling with that for sure. Yeah. - So how did you deal with that? I mean, it's interesting because I talk to kids all the time when I go into schools and I try to tell them what they can do if they're faced with this. But how, I mean, how did you address it or deal with it? Or did you? I mean... - I have to bless my family at this point because they raised me so strong and resiliently. And I think that's such a crucial aspect is, you know, once you have a child with a difference, it's not only exciting that you've, you know, educated yourself and all of that, but it's also learning those great advocacy techniques so that you can start teaching your child how to educate and, you know, kind of jump in and say, "Hi," and start that conversation and make people see that we're not scary and all of that. And I know my mother, I bless, you know, I'm thankful that I got her as a mom because she taught me very early, you know, don't worry about the staring. Don't worry about the ogles. Walk up, say, "Hi." Start the conversation, let them touch it if they want to, you know, let them talk to you. Let them see that you are completely normal. You just have a few extra blood vessels. And that was me on the school playground, "Hi, I'm Chelsey. Wanna go skipping, wanna go play, wanna go do something?" And yeah, I still dealt with some people that were extr
