Two Sides to a Face: A Journey from Adversity to Advocacy

myFace, myStory

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 extremely awkward and couldn't handle it. But I think it gave me such tools to just kind of push past the awkwardness, deal with the elephant in the room.

- Right.

- You know, and get things done. Yeah.

- Yeah. I think sometimes, especially for younger kids, it's the unknown, the fear of the unknown. So you introduce them to it and they go, "Oh, it's not a big deal." It's just a part of somebody. And it doesn't work for everybody. But I do think there is that element of just introducing them to what it is. 'Cause sometimes they just, the fear is, I don't understand. I don't know why they look so different. And that makes me a little nervous or even a little scared. Right? And so, yeah. So what was the pivotal moment in your life where you started to have more self-acceptance? I mean, I think it's a journey. I don't think it sort of happens overnight, but is there a point in your life where you started to accept yourself more?

- I have to agree with you. It's definitely a journey. But I know one big piece of it for me was I had been going to the Boston Shriners Hospital and I was receiving laser treatments on my birthmark. And I could do that up until the age of 21. And my 21st birthday came and I knew I was done. I couldn't go back. I'd have to look for a private clinic. And there was so much trauma and stress with that, that I went, "Okay, Chelsey, well you've gotta either kind of grow into your birthmark or look more into makeup or look into a way to hide it or never leave the house again."

- Right.

- And I went, "I can't do that." You know, I wanna go out, live a life, do my things, you know? And that kind of pushed me into going, okay, well if I'm gonna go out, I'm gonna go out loud and proud and, you know, accept me for me. And it was definitely a journey. There were days, you know, you didn't wanna get out of bed or leave the house. There's still days, but it's, you know, dealing with that dark stuff to get to the light stuff again.

- Right. And so speaking about going out into the world, what motivated you to pursue your education and to do what you're doing now in terms of studying sociology and DEI.

- Growing up, I didn't see a lot of people like me. I didn't see a lot of people like me in important roles. You know, I'd gone back to school a couple times with things, I'd worked and then I got married and then I had kids. And I had two little faces looking up at me going, you know, "Mom, how do you do this?" And I went, if anything's gonna motivate me to be that role model, it's going to be all the cousins I grew up with, all the friends of cousins, all my siblings and my kids. And I look at my two daughters and I can look at them proudly and know that, you know, every little ripple that I make is for them. And they have in turn shown me so many instances where they're willing to get up and advocate for me or someone with a difference or disability. You know, and I know, okay, I did that. You know, I helped create that motion and that, you know, that's what should be done. Or those are the good ways to advocate or to talk about someone or deal with someone. Yeah.

- Do you think your kids are more empathic because of your experience or because you have a facial difference?

- Yes. Definitely. My 7-year-old iwears her heart on her sleeve. And she is the kindest, that's all the teachers ever tell me. And it's in her report card every time.

- Aw.

- And, you know, she's such a kind soul, but the fact that she will talk to someone and go, "I love your birthmark." And she'll have these conversations with people that I go, I wish someone had been there to have those with me. And I go... You know. Yeah. Yeah. Very impactful.

- Yeah, so I don't have kids of my own, but I do have a niece and two nephews. And I feel like because they grew up with me and all the things that I was doing, 'cause we did theater at one point, telling the story of our lives and all of that. And I feel like they are so much more empathic

- Yeah.

- Because of me. And I just remember even when they were little kids and they would tell me stories about how they did, you know, kind things or they saw somebody who looked different and they talked to them, whatever that was, you know, it was just, so I do think it makes a big difference. So let's talk about your memoir, "Two Sides of a Face" and your journey with Sturge-Weber syndrome. So what is the inspiration? Why did you decide you wanted to write it?

- People had been talking to me for years. You know, with all the adventures that I had had, and connections, and the rarity of my condition, and kind of my self journey. It kind of all just rolled into one. And I went, you know what? I think it's time. I think it's time I write some stuff down. And then taking note when I did start researching and looking into it, that there are only a couple books out for my condition. But both of them were told from parents' point of view.

- Mm. Interesting.

- And I went, that's great, but you weren't there dealing with painful treatments, or the bullying, or the interactions with people, or the biases in workplace practices, or, you know, all the things that I might've experienced. So I went, you know what, I think it's time. And you know, the more people with facial differences that get our stories out there, the more we can help the face equality movement along. So, I mean, I am pro that.

- Yeah. So how long did it take you to do from the moment you had the idea to being a published author?

- Probably about five years. Yeah. Yeah. Hobby on the side.

- And what has been the, I know it's recently come out, but what's been the response so far?

- So far it has been overwhelming, almost. The amount of people that have reached out and been like, I've actually had a few colleagues, even from like high school reach out and go, "I didn't know you were experiencing this or going through this," or, "life was so hard, you know, we just assumed." And I went, "That's the problem with assuming." You know, it's taking the time to kind of understand that, yeah, I'm different, I'm gonna experience my journey a little different than you.

- Right.

- And you know, people in the facial difference community have been so incredibly kind and sweet and sharing and, you know, proud. And, you know, it feels like I have family, extended family, now reaching out, kind of going, "We didn't realize your condition was so extensive," or that, you know, "the amount of work you're doing," or it's been enlightening and incredible really.

- Mm. I think about doing it one day. We'll see, I'll write my own story one day.

- Oh, I will buy the first copy.

- Oh, thank you. Thank you. So I know you are doing a lot of advocacy and what is the thing that you are advocating for? What is your impact of advocacy?

- Oh, several organizations. Of course, you know, Sturge-Weber Foundation, Vascular Birthmark Foundation. Here in Canada, we have AboutFace Canada, even Face Equality International, I work with them a little bit as well. All incredible organizations. The more work we can get ourselves out there, or the pun, you know, the more we can get our faces out there, you know, and be seen and be heard and be advocated for and be treated like anyone else, the more the perceptions and the cultural awkwardness and all of that can be worked on. So, I mean, for me, the more that we can kind of move towards working on critical things like diversity, equity, inclusion, workplace biases, bullying in the workplace, all these horrible stigmatizations that I know even just I have experienced, but I know many in the community have. You know, the more we can get the ball rolling on critical pieces to that, the better.

- Yeah, I feel like people don't necessarily think, you know, we talk about bullying in school and all of that, but they don't really necessarily think about how that translates the transition from high school into adulthood, whether it's going away to school, whether now you're advocating for yourself, your parents aren't advocating for you as much. And then, you know, what happens when you go into the workplace. I'm not sure that is talked about nearly as much.

- No.

- The other thing is, I think that facial difference, and I think it's happening more and more, but it's not really a part of the conversation when you talk about disability and all of that. It's just not part of the conversation. And I think, as a community, what I love is seeing that there's more of that happening. And I think FEI, Facial Equality International, is helping that. I think all the organizations working towards, there's more awareness I feel like, than ever before. And I think, in some ways I think "Wonder," the novel, and the movie helped that along somewhat. For sure.

- Yeah.

- 'Cause it was for me, and I think for many others, the first book that even talked about it in a very big public way. But I don't know what you think, but I feel like there's a lot more work to be done. I just wonder if we're seeing the change that we want, what do you think?

- Oh, I've just finished my certification in diversity, equity and inclusion, and I'm still working on my sociology. But even when it comes to academia, we do not have enough knowledge, if any, on any sort of aspect of disabilities other than these standardized, you know, couple categorizations.

- Right.

- Very similar to how the LGBTQ community feels where you have, you know, different representations that just aren't getting the coverage. Facial differences, we have barely scratched the surface. I know they're not mentioned. Doing personal work myself, just trying to look into the diversity, equity, inclusion aspect. So many organizations claim to be DEI-related. But none of them know anything about face equality, facial differences. You know, they go, "Oh, well are you part of a disability? Do you get coverage?" And I go, "I'm not disabled. No." I'm actually perfect. I'm, well not perfect, but I am abled enough that I don't classify myself as that.

- Right.

- Should that matter though? Does that mean that I get less support? As of right now, it does.

- Right.

- And that is heartbreaking for people, you know, like us that go, we need support, we still need help with things. Yet I have more human rights right now as a woman than I do as an individual with a facial difference.

- Correct.

- And if that doesn't hit people's heartstrings, I still remember hearing that for the first time and doing some research with my human rights aspect work. It was a slap in the face. It was heartbreaking to know that right now we have not made enough movement. And thank heavens for Face Equality International because they're working on it the little bit that they can. But we as individuals, that's where people can get away with so much workplace biasing and bullying and discrimination and stigmatization, because we do not have the support that we need.

- Right. Right. And on the flip side of that, I feel like people, I think, make assumptions because we look different. Oh, you're not smart, you're not capable. And then those biases translate into the workplace because then you get treated differently because those assumptions are made. And that to me is, I think, one of the biggest challenges as well. I mean, there's so many challenges, but I think that is one of the biggest ones of how do you change that? How do you change that thinking? Well, wait, I'm smart, capable, I went to school, I went to college, all of that. But people still make those assumptions. And I don't know if you've experienced this, but even growing up, when I was with my parents or another adult, sometimes they would even talk to them. It was like they talked through me. It's like I was in the room, but I didn't really exist. You know? So there's so much work to be done. But I'm thrilled that it's happening more and more. I mean, I don't know how old you are, but I am as old as I am and I feel like in the last few years we're really starting to see it. There's more and more talk about it and more coming together as a community and advocating hard.

- Yes. And I mean the more that we can do that, the more. You know, and that is the only, the only struggle that I see with us is right now so much of society is trying to break groups apart into littler pieces.

- Right.

- If all of us stick together as a community, you know, facial differences community, we are millions of people. So we can easily stand up and go, "Hey, it's about time people started taking notice of us in the right way." And we get progress moving in the right way.

- I agree.

- Yeah.

- So to our audience, I hope 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're subscribed to our YouTube and Apple Podcast channels and sign up for our mailing list at myface.org/mystory. So, you talked about earlier about being married and having kids and going to school and all of that. So how do you manage the life-work-balance as a student, professional advocate, wife and mother. I'm impressed, by the way.

- How I get sleep, that's usually what people, that's the first question they ask. "When do you sleep?" You know, and I laugh and I go, "I, somehow I'm still here." Advocating is always a crucial piece, but you know, of course end of the day my kids come first. That one's easy. Right now, unfortunately, due to workplace bullying, I'm not working. I was let go very unprofessionally.

- Mm. Wow.

- Looking for work, but that's okay, gives me more time for schoolwork and you know, kind of doing all my extra stuff now. It was actually perfectly timed with the book coming out. And right now it's more just kind of seeing where I'm needed and kind of going with the flow of things. Yeah.

- So I have to ask, because it's something I think a lot about, like how did you put your self out there in terms of dating and meeting somebody and all of that? 'Cause I'm really curious, because it's something that I personally struggle with a little bit.

- I think everybody does, but you know, especially for us, we're going to a little bit more because we're so stressed about not fitting that cookie cutter expectation of what the other gender or that other partner's going to need. For me, I was brave and I put myself out in a social situation. A group of friends went out and my husband happened to come with a friend and I had the courage to just kind of walk over and start talking with a couple people. And we chatted and then from there it kind of led to, well you know, do you have, this is gonna age me, "Do you have MSN messenger?" He asks me. And I go, "Yeah." He's like, "Well, do you wanna, you know, we can chat." And I'm like, "Sure, yeah, let's do that." And you know, one thing led to friends, to suddenly we were chatting almost every day to, "Hey, I'm going to the mall. Do you wanna come?" You know, and it was trying to gain that self strength and that I can do this, come on. To the next thing I know he's asking me out. And yeah, it kind of just went from there. I thank my lucky stars. And you know, it's having that bravery, that moment where you just go, you know what, again, heck with what society says, I have a connection, or I'm feeling this with someone and just getting the strength to do it.

- Okay, I'm inspired. Thank you. So what advice do you have to a listener who might be struggling with their own self-acceptance?

- Oh, first thing I would say is, especially with someone with a difference, is never feel that you are failing. Every day that you are getting up and you are taking a look at that mirror and you still have the strength to leave your house and do what needs done. You have exceeded more than the average person ever expected. From there, I would say that the hardest battle that you're ever going to fight is the one of self-love. And again, that is not something that will be cured or fixed in a day. That is a journey. That is, you know, finding that light at the very end of the tunnel and reminding yourself that if you only knew how incredibly special that you are, our journeys are far more extensive and elaborate and beautiful and different. And there isn't even strong enough word for unique.

- Right?

- That we should be celebrated and praised for the fact that we actually are accomplishing so much more than the norm. So it's just getting past those negative, indoctrinated, cultural setups that have been placed upon us and breaking free and just rocking it, you know. Being your own you and owning it and loving it and loving you.

- I love that. Somebody recently told me to own my power. And I think I just love that phrase. I keep using it. I'm gonna own my power today. So, yeah. And what advice do you have for parents who've just learned that their child has a facial difference?

- Oh, probably one of the strongest things that I know stuck with me with both my parents was, you're going to treat your kids like you would with any other kid. You're gonna treat them, especially when they're at home, like normal kids.

- Right.

- They want that normalcy. They don't want to feel like 24 hours a day, seven days a week, they are strange or odd. They wanna be loved for them. You're going to treat them the warriors that they are. You are gonna celebrate every accomplishment, love them, you know, but you're also going to know when to step in, and support them and be that shoulder because they're gonna come to you. They're gonna have days where they just wanna cry. Let 'em cry, let 'em scream out rock songs like my parents used to from their room.

- Right.

- And you know, be there as support. Know when to get them support and reach out to the community. Because a lot of us, especially us older generation, we are happily here for support, for questions, for love, to remind you you're doing an awesome job, because you are. And you know, connecting, family. We are extended family. We may not be connected through blood, but our experiences are so similar. We will understand every struggle that you're going through because we or our families have gone through the exact or similar thing.

- Like I always say, there's power in the shared story and knowing you're not alone.

- Yes.

- It's so true. I think we all think we're the only one, you know, we have times when we think we're the only one. And then when you find a community, whether you found myFace, any community, and you realize, "Wait, you had that same experience. I had no idea. I thought I was the only one." So I've seen it with parents, with individuals. The other thing I was thinking about, because you said you had siblings, right?

- Oh yeah.

- How did it impact your siblings having you with a facial difference, would you say?

- I know it affected them socially. I know there were friends and there were parents of friends that, oh, once they saw me or they saw my parents dealing with me, you know, they kind of pulled their kids away from my siblings. And you know, I actually have a spot in my book where, you know, I apologize to my siblings, because part of me felt bad that, you know, I may have affected them. But that's where it's so crucial as a family that you support one another. And you know that those siblings grow up to love one another and be strong and be a team. And if anything, my siblings probably brought me the most normalcy than, you know, any part of my world growing up. And you know, I still remember having the fights with my sister and you know, having my brother chase me up and down the stairs, and loving every minute of it because I felt normal. Nobody was talking to me about Sturge-Weber or birthmarks or seizures or anything medical. It was, "Chelsey, it's my turn with the game controller." And you know, it was that same, you felt like the kid in the TV and it was what we needed. So.

- Mm-hmm. So how has your experience as a public speaker and social media influencer, helped in promoting your message of inclusivity and diversity?

- Oh, the connections that I have made. I have had so many parents reach out and community members reach out. You know, people that didn't have the strength at the time to deal with what they were going through, that chatting with me, connecting with me, you know, reading some of my social media things, or even recently with my book, having a couple reach out after a book just to say, "Wow, you know, I get where you're coming from. I realize my struggle is similar, but I see how you got through it." And you know, I'm not trying to win gold stars. I'm simply sharing what I went through in hopes that I'm enlightening someone, or giving someone, you know, maybe they hadn't thought of something before and I've helped them reach a new point. So, you know, whatever support I can do,. Be the big sister that I wished I had growing up.

- Yeah. So speaking of having support, is there a mentor or a support network that has been crucial in your journey?

- Oh, there have been several. I know here in Canada, we have AboutFace Canada. They are an incredible organization. They have a wonderful program called the Peer Support Program, where individuals from the facial differences community can kind of connect with one another and you kind of get to sit down and chat. And I've been a peer now three times.

- Okay.

- And all three of my peers, you know, I feel like I've left them in such brighter positions than when we first met. And I thought that, you know, that's been life changing for me, knowing that I could make that difference. Along with the Face Out Project, wonderful organization, my friend Sora, actually, we all work together with that. And the amount of work that we're trying to do in the facial differences community has been enlightening and astounding. And, you know, the small progress that we can make, you know, you have that family, the support system of people that are going through similar things.

- Right.

- And we can touch on topics that, you know, not regular people usually discuss. So it's kind of nice to connect on that part. Yeah.

- Yeah, I have found that we have the adult support group and I have found the same thing is when the power of one, but the power of coming together and talking about things that again, we can't always necessarily talk about with family or friends and outside of the community. So, yeah. So, speaking of community, and you've kind of touched this, but the importance of being part of a community like myFace and how important that is.

- Oh, very crucial. You know, whether it's your organization, like if you have an existing condition or you join a support group because you've had an acquired facial difference, it's having that family and it's having the family that actually isn't connected or that, you know, isn't with you all the time, but understands every situation. Or you name a procedure and they go, "Oh, I remember getting one of those."

- Yeah!

- That was fun. Yeah. You know, it's, "Oh, and I had to deal with this." Or "Oh, I tried this new medication." You know, "Did you guys have this kind of side effect?" Or, you know, it's people that have gone through such similar things that you can have these most random conversations, that, yeah, family support is nice, but it's not the same. You know, your parents, your partner, they can try as much as they can to give you that hug and that support, but at the end of the day, unless I'm speaking to another person with Sturge-Weber, they don't understand laser treatments for birthmarks or eye procedures and yeah. It's that brother from another mother.

- Exactly. Exactly. So what are your future goals, Chelsey, in your advocacy work and personal development

- At this point it's, you know, getting out there as much as I can, sharing my story as much as I can, helping the face equality movement along as much as I can. Maybe another book. We're seeing, I'm trying not to fill the plate too full right now obviously. It's, you know, helping the face quality movement with the wave, you know, being that ripple, ripple starter. You are one as well. So, I mean, it's just an honor to connect with you. So that's where I'm like, ah! You know, it's whatever we can do to get out there in those positive moments and make those changes and know that, you know, the younger generations and the kids looking up to us go, "Wow, look what they've done for us."

- Yeah.

- It's making those hard conversations happen, bringing those elephants in the room forward. It's standing up and going, yeah, you know what, it's about flippen time people started taking notice in a good way.

- And I think we, especially for younger kids with facial differences, for them to see us and the role models that are out there. And look, we are thriving members of society just like everybody else. And I think for them, it is so helpful for them to see that because they can. And even for parents to see it, because when they have a 3-year-old who's, somebody, a 6-year-old, even, they can't see much beyond the future. And so for them to hear our stories, which is why I think it's so important to get our stories out there because I think they need that and yeah. So what would you say to your younger self today, knowing what you know now?

- I have thought about this and you know, there's days where I have like cried wishing I could just walk up to her. And especially through those teen years, I can picture her laying on the bed sobbing and I just wanna pick her up and I wanna give her a hug and I wanna just tell her, "Yeah, I know it's not fun right now, but it does get better. There is light at the end of the tunnel, I promise it gets so much better. Yeah, there's gonna be some struggles, there's gonna be a bunch of dark moments, but you're gonna shake through it and wipe away the tears, pop on some motivational music. Sing your heart out if you've got to, and stay strong, you know? Keep smiling. It's it's gonna get better."

- I wish I knew that then, 'cause that would've been really helpful. Honestly. I can relate. So who do you see when you look in the mirror today?

- Oh, I see a strong, confident woman. I see a woman who, almost in the sense of a true Gemini, my birthday's in May, so it works out perfect, but, you know, having one side of me that yeah, is strong and smart and coherent. And yeah, there's that little bit of a rebel side to me too, who also goes, you know what? I'm sick of being held down by very aged practices of what is okay and what is acceptable in society. I'm tired of being cast into the shadows. I would much rather be out in the light, being seen as a role model and being there in an image for all those kids and all those, you know, individuals that are struggling to see that, yeah, it's gonna be dark, but it's right there. You're so close.

- I love that. So before we wrap up, where can people find your book? "Two Sides of a Face"?

- I am available on Amazon, Barnes & Noble. It should be coming to Chapters in Indigo shortly. It is on Kindle. It is on Kobo. You can basically look it up online and you can probably find it.

- Okay. So Chelsey, thank you for sharing your story and your journey. And it has served as I think, a beacon of hope, encouraging deeper understanding and acceptance for all who feel marginalized in their physical appearance. And I can relate to so much of what you talked about today. And I, again, encourage everyone to read Chelsey's memoir, which you can purchase online. And I confess that since we scheduled this last minute I only just started reading it. But I love what I've read so far, so I encourage everyone to do so. So thank you Chelsey.

- Thank you.

- Okay. So Chelsey is an inspiration to me and everyone she meets. Everyone has a story and I'm hopeful that by sharing stories like these, we can make the world a kinder place. 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 paved 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.