Hiding Behind a Mask: A Conversation with Mary Avella

myFace, myStory

On this month’s myFace, myStory podcast, host Dina Zuckerberg is joined by Mary Avella, born with Crouzon Syndrome. They will discuss how those with facial difference can hide their true selves wearing both figurative and/or literal masks, even creating a personality. What happens when you remove those masks and reveal who you are underneath?

- [Announcer] Welcome to "My Face My Story, Voices From the Craniofacial Community," with your host, Dina Zuckerberg.

- Hello and welcome to "My Face My Story, Voices From the Craniofacial Community." Whether you're watching on YouTube or listening on Apple podcasts, quick subscribe now so that you'll never miss a future episode. And if you're a fan of "My Face My Story," rate and review the program on Apple Podcast so that we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the director of family programs at My Face. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face My Story" is about people like us being seen and heard, about sharing stories within the cranial facial community and with others. Today I will be joined by Mary Avella. Mary was born with Crouzon Syndrome and she has had 30 surgeries. She is a student at Hunter College where she is majoring in psychology, neuroscience, and aspires to be a neuroscientist. She is passionate about advocacy for the disabled community and has been a member of the My Face family for a long time. She is also passionate about reading. Welcome Mary, I really look forward to our conversation.

- Thank you so much for having me. I'm so excited to be here.

- Great. So Mary, can you share with the audience about your facial difference and describe your difference for those who may not know what it is?

- Absolutely. Crouzon Syndrome is where the seams of the skull are not fused properly, and one the main symptoms is that growth in the middle of the face is decreased.

- And what was your childhood like for you growing up?

- That's a very good question. I mean, I do have plenty of good memories, but I have just as many bad. I mean, surgery was, I had my surgeries very young in childhood, so they were all very traumatic for me. And again, that was half my childhood. So it definitely was not easy. I was also very different from all the other kids at school. I was the only one that looked like me. I was in special ed class, one of the special ed classes. I had a nurse. At some points later, I had a para, so it was definitely an abnormal childhood.

- So what drew you to psychology neuroscience? And why do you wanna be a neuroscientist?

- Well, it is a very complicated answer. I was trying out a few different majors and I really didn't find the right fit. I was math, I was English, which is like total opposites, and I really didn't know what I wanted to do. And then I've been going to therapy since I was five. So I had like, I had an inside piece to that world of psychology. So I've been a part of it for so long. So I figured, let me just try this, and I took my first introduction to psychology class in 2022 and I absolutely loved it. I wanted to help people like me who have facial differences and who have autism. I'm on the autism spectrum, and I wanted to just help people because a lot of people don't have both autism and a facial difference. And it's even rare just to have a facial difference. So I wanted to, as I said, just help people. But then I realized maybe being a therapist wasn't for me, that was the initial path I wanted to go, and I figured, well, I still wanna help people, but I wanna do the research behind that. That's how I can still help people. And all that is neuroscience.

- Yeah, and I think we can use more researchers, especially in the craniofacial space. So that's great. So during the pandemic, we were all literally wearing masks, but I think many of us figuratively wear masks, especially for those of us with craniofacial differences. And you and I have talked a little bit about this. Why do you think we figuratively wear a mask?

- Well, it's actually, I'm studying this with psychology, everybody does it to a point. We all have different aspects of ourselves. Like for me, I have work, Mary, I have school, Mary, I have family, Mary, it's, everybody does this. It's how we function through the world. But some people put on different aspects of their selves a lot more, or they try and hide who they are a lot more. I think that some of us wear figurative masks more than others because society has taught us that we're not good enough and we're very ashamed of who we are. So we feel like we have to be somebody different.

- It's almost like creating a different persona of who we are.

- Yeah.

- To try to fit into that mold or that experience that we think others want of us, I think.

- Exactly, exactly. We think that, especially from a very young age, we're taught, okay, so if you are this type of person or you're born this way, you're supposed to act this way and you're supposed to fit into this mold, and if you don't, then there's something wrong with you. So then a person will feel like they have to be less of themselves and more of the mold that were taught to be.

- So how does wearing a mask protect you?

- Wearing a mask, now, a bigger reason why I wore a mask was actually, it was more motivated by my autism than my facial difference. But there were so many aspects to this. Wearing a mask helped hide me in the fact that I didn't want people to know that I had autism. And obviously I can't hide the facial difference, but it would just help people like, hey, look at me, I'm a normal person like you are. I just have this very different face. It shouldn't be a problem. So wearing a mask, definitely, I tried to mold myself to be more like other kids in school, other girls, what women are supposed to be. So I definitely tried to do that. And for a long time it did hide me, it hid me well. And also masks definitely hide our deep, inner emotions. So a lot of the pain that I was going through was hidden by trying to be like everybody else.

- Yeah, it's like I didn't want people to see that side of me. So I created this whole other person so that I could appear this way when maybe I was still feeling that way. But it allows you to do that, when you wear a mask in some ways. So during the pandemic, do you think there was a normalizing or leveling of the playing field when we were all wearing masks?

- 1000%. That was one thing that I noticed right away. I've been stared at since I was five years old because of how I look. And it's especially because again, Crouzon Syndrome, it affects the middle of the face. Half of the middle of our faces were covered by masks. So if you're just seeing me from like halfway up the nose up, it's very, it hides a lot of the parts that were very different. So I mean, my eyes are not the same size. My nose is a little pinched on the very top. So that part was seen, but like the difference in my jaw or, which has been fixed, but the difference in my jaw or my lips already been, or maybe like how much bigger the lower part of my nose is compared to the upper part, were all covered, and I noticed a lot less staring.

- Right. And were there any challenges for you in wearing the mask?

- Yes, because of Crouzons, I'm primarily a mouth breather. It's very hard for me to breathe through my nose. I have to like, like people do it naturally. I have to like, okay, I'm breathing through my nose now. I have to like prepare my body. So if you have a mask covering, that's like right on top of your mouth, that makes it very hard to breathe. Most masks I couldn't wear because every like two minutes I'd have to take it off and engulf so much air through my mouth. I had to wear more flexible ones or maybe made out of more stretchy material. Like I could not wear blue hospital masks. I could not breath in the those, it was very hard. But I had to wear these specific black, like stretchy masks that were right on top of me. They had more of like a gap in between the mask and my mouth.

- Right, I found also, because I'm also a mouth breather, that, and I don't know if this was true for others, but I found my glasses were always getting fogged up with the-

- Yeah.

- The mask because I think I breathe so much here, so if it wasn't capturing it all in here. Yeah, so I get it. So what are the consequences of wearing a metaphorical mask? Do you think we can wear a metaphorical mask and be authentic at the same time?

- That is a very gray area question.

- Yeah.

- With wearing a mask, you know, you're performing, you're putting on a part. You can't always perform. Like psychologically, that will wear and tear you and that will do a lot of damage to your mind. And eventually the jig's gonna be up, or eventually you're just gonna get so, I know me personally, you're gonna get so angry at yourself or just so tired of having to play two parts that you're just gonna- one day, and the jig is up. And I feel like you, it's very hard to be authentic. Being authentic and wearing a mask are two opposite things. It's very hard to do two opposite things at the same time. But it's funny that you mentioned this, that you asked this question because there is a quote, I heard it in a TV show, "Disguise is always a self-portrait," and I think there's a lot of truth to that. We incorporate a lot of subtle truths about ourselves in the mask. Like we, maybe the person that we want to be, or like a certain quirk that they have will incorporate that. Or maybe a quirk that we have, as being as our authentic selves, it'll still be in the mask a little bit. Or sometimes the, or sometimes even the mask will be some of our inner emotions that we wanna let out, but we just label it as another personality.

- Right. And I think the vulnerability, I think, plays a part in this because it's really hard to be vulnerable and let people see you when you're hiding behind the mask. But it's almost, I also think of a mask in some ways of a wall, you kind of build a wall in some ways. There's another layer, so it's hard for people to get too close to you if you're wearing the mask or not willing to show your vulnerability.

- When I was in middle school, I felt the exact same way. For a lot of people, middle school's a terrible time. I think for people who have disabilities like us, we get a much worse middle school experience. So I remember it was right before middle school that I was diagnosed with autism. Well, that's what my parents told me, I was diagnosed in elementary school.

- Okay.

- But that was like a big thing in middle school, like half the high school and people could not know that I was on the spectrum. I felt like I was already bullied enough or teased enough. I didn't want people to know. And I felt like everything that I did was just wrong. And that's how I was treated by the peers that I was with every day. So imagine going through that every day, people being like, there's something wrong with you or stop doing that. Or a big thing was, because I'm a mouth breather, I had to eat with my mouth open, like kids literally reprimand me, "Eat with your mouth closed." And so I felt, just because of the autism, it was very hard to make friends and because I didn't fully understand social cues or I went to a co-ed school, so boy, girl dynamics, I didn't fully understand, or I tried to, but I just couldn't quite get it right. So I would always try to be somebody else, and I thought there was just so much pain in friendship. I thought people are just terrible and the world is cruel. So I had to literally envelope parts of my heart in ice, metaphorically, and I put up a wall. I wouldn't let anybody in, at least outside of my parents, and I felt that way, very much so.

- And I think a lot of us in the craniofacial community, and I imagine in other communities, that wall was a very prevalent theme I think. I think a lot of us put up a wall to all those things you just talked about. So to our audience, I hope that you're enjoying this episode of "My Face, My Story." 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 channel and sign up for our mailing list at MyFace.org/MyStory. In the young adult novel, "Wonder," a book that I think we both love, Auggie, the main character, was born with a facial difference and he wears a mask for Halloween. Why does he like wearing a mask, and why do you think a lot of people in the cranial facial community can relate to that?

- Well, I remember in the book, even though I read it a long time ago, he said that he, kind of what what we said earlier, he was just a normal kid on Halloween. If he wore a mask, like there was a part of the book where there was a rumor spread around that he had, like a plague. If you touched him, you had to sanitize yourself right away. People thought that he was like, he had a disease or something, and there was a scene, at least in the movie, where kid dressed in the same costume, or no, I think it was Chewy from "Star Wars," high fived him, touched him, totally normal. And he felt like if I was not wearing a mask, that wouldn't happened. But if I wear a mask, then nobody stares at me, nobody treats me like I'm different. I'm just a normal fifth grader.

- Right. Yeah, it was such a powerful scene. And then when he overhears the kids talking about him and they don't even know that it's him under the mask, or under the costume.

- Yeah.

- So do you think it can be hard to remove your mask, which for many of us, we've been wearing most of our lives? And what do you think is the hardest part of doing that?

- It is 1000% one of the hardest things I did. It is 1000% extremely hard. I think because again, all of us are wearing a mask. It's actually become kind of a norm, especially for people in the autistic community. A lot of autistic girls, research has come out that masking is very common for them. So like, they'll mimic how other kids act. They don't understand it, but they imitate it. And then that actually prevents them from getting diagnosed and they will get diagnosed once they have, like a mental breakdown, in their twenties. So it's really, it has very serious consequences, masking, because as we're seeing with disabled people, you might have people, if it's mild enough or you're what's called high functioning enough, you slip through the cracks and then you don't get the help you need. Like if I, for example, even though my result is very mild, if I got complete reconstructive surgery, I might not be a part of my face. I might not get certain services that I need or be entitled to certain surgeries because I look fine. If I acted completely normal and I hid my autism so well, people would, I wouldn't be entitled to some of the services that I have.

- Right.

- I, because, they're gonna say, "Well, nothing's wrong with you, you don't have anything." So, and then you just dig a deep hole for yourself.

- Right?

- So, it turns into this big problem and then it just escalates further and further. I think the hardest part of it is knowing what's gonna happen after you take off the mask. Because it's like, okay, I'm doing this. How will people react? Will I lose friends? Will I get hired for a job now? Will people even care about me anymore if I actually am myself because they've known this other person this entire time?

- Mmhmm. So is the work that you will do, I think, and the importance of mental health and psychology and really thinking about this because it's really important because like you said, that piece is so hard. I mean I am much older and it's taken me a long time to actually remove the mask. And I think there's still elements of myself that I hide. And I wanna say that I think, like you said at the beginning, we all do this to some extent, whether you have a facial difference or not, but as you say, it's much more prevalent or much more, the desire is greater for those of us in the craniofacial community and for those on the spectrum. So. So I think you alluded to this, but have you taken off your mask and what has that been like to reveal more of yourself?

- First time I took off my mask, well I started in junior year of high school. I was finally like, "That's it, I'm not hiding anymore. This is exhausting." I was petrified that I was gonna lose friends. My parents were like, "Mary, they probably figured out that you are autistic already just because of some of your mannerisms," or saying something that was socially wrong in an instant, or just being like quirky. My parents are like, "They probably have already figured out that something's up." But I still thought that I've hid it so well, and even if they did figure something out, but I'm officially telling them now, I'm gonna lose everybody. Facial difference, again, is harder to hide unless you have massive plastic surgery. But because I had so much surgery already, I figured that, oh, it's mild enough that I can get away with saying I don't have a facial difference. And I was just so scared, I was petrified, but I really just told my friends and that was it. They were accepting of it in high school and then I started to just talk about it more because I knew it needed to be talked about more. And I also, again, was just tired of living this false person's second life identity that I just didn't care anymore if people knew. And then I officially took off my mask last year, in the spring semester of 2022. I actually had a class about wearing masks and I'm in the honors program as well, and they do special classes that just the honors students could take. And it was my first honors class, and this professor, she was teaching a class on masks that have been worn throughout time, like masks, like at a masquerade ball or certain criminals, they will wear masks, superheroes wear masks, but we talked a lot about the Covid masks as well, and we talked a lot about figurative masks and she knew, I told her who I was. I told her about the diagnosis, about everything, and she brought up the idea, she said, "You don't have to do it, but if you want, I would really like it if you talked about your experience in the class." And I was like, "Let's do it." And it was one of the last classes and I talked about all the different personas I put on. I talked about the autism diagnosis, all the surgeries, briefly, 'cause that's a lot. But I did this whole PowerPoint presentation. I showed before my 2020 surgery. I showed after my 2020 surgery. I showed so much and I literally said, "I am taking the mask off." And it was just so rewarding. It was amazing finally being myself.

- And what was the reaction you got from the students?

- Tons of applause. Tons of applause, everybody was so happy for me, I got cheers.

- Great.

- Yeah.

- It's like Auggie says at the end of the book, "Everybody deserves a standing ovation," at at least something like that, at least once in their life. And it's such an amazing feeling when that happens and you, yeah, so that's amazing Mary, that you did that and-

- Thank you.

- Yeah. And I think we could all learn from that, 'cause I'm still working on removing the mask completely. So amazing. So what advice would you give to someone with a facial difference who is afraid to remove their metaphorical mask, or the figurative mask? What would you say to them based on what you just shared?

- Oh, I would say, I would say it's hard. It's gonna be a long road. Don't, like, I don't want to romanticize it in any way, like don't think that it won't have consequences because you might, I had a very fortunate experience, you might lose some people. And it's, you might lose some things. But in the end, it's definitely rewarding because it's so taxing on your brain, on your mind, that it's just so rewarding. And sometimes when you have the mask, you become so immersed in the mask, you even forget who you actually are. That's happened to me.

- Right.

- So I feel like if you want to be yourself, do it slowly. If you don't do it, if you do it all in one, it's gonna be harder. It's gonna be more taxing on you emotionally. Do it piece by piece. Trust, make sure you have a support system to do it. Make sure that you have family and friends who truly love you, but have known you with the facial difference, who have been with you through the surgeries and have been with you through the diagnosis and have talked to doctors and have done everything. And make sure that you have them there with you. Remove the mask with them first, then move on slowly to other groups of people.

- So how has finding a community like My Face helped and shaped who you are today?

- My Face, oh my God, we have such deep history. It was so relieving and it was so nice to meet a whole community of people like me. It's been one of the circles where I get the respect that I deserve. I get the humanity desire that I deserve and I get to be friends or at least acquaintances with people who look like me, or if not exactly like me, like some of them don't have Crouzon Syndrome, they have other facial differences. So we're all in the same boat. We've all had a million surgeries, we've all had the good and the bad doctor experiences. We all have been through the recovery phases of after surgery, and we've all walked, we've all walked the long road between each surgery, and we've all been through what it's like emotionally, how emotionally taxing, even if you are putting on a mask, the lives that we have lived has been emotionally taxing because who would wanna go into surgery as such a young child, who would wanna go through that pain? So who- had major anxiety every time I had a surgery, especially at a very young age. I only started to not be so nervous when I was like towards the end of it, when I was like eight years old.

- Right.

- So, and then my 2020 surgery, which is conquering my fears, it felt incredible. And I would just say, do it slowly and make sure that, make sure it also, My Face has, My Face has made sure that I have a community that I could take the mask off in front of before doing it in front of the world. My Face has definitely given me the support to do it. It was actually, this was a very recent decision after, it was actually after a, My Face, one of the support group sessions, I decided I'm not gonna have anymore surgery because I don't, none of them are medical necessity anymore. It would just be for aesthetics. The big reason why I first wanted to do my 2020 surgery was because it was aesthetically pleasing to others, and I just wanted to be accepted and I was doing some of it for me, but some of it for others, and I was finally, after one of our support group sessions, I was just like, no, I'm not doing that anymore to please others. I'm not going through trauma just to get other people to like me.

- Right. It's a great learning, and it's such a great advice you're giving, Mary.

- Thank you.

- So speaking of advice, what would you say to parents and families who may be at the beginning stages of their journey?

- Well, first of all, most parents, like my parents, had no idea this was gonna happen. It's very much, it's a rare, again, they're all rare genetic mutations. And my parents definitely got a surprise when I was born. And they were, the doctors were running tests and they realized she's not breathing through her nose and they had a feeling it was Crouzons, and they told us go to NYU, see Dr. McCarthy, the legend, Dr. McCarthy, and get a confirmation from them. And the rest is history. But I would definitely say to parents, and families going through this, the most important thing you could do for your child, treat them the way that you would wanna be treated, give them their humanity, give them love, teach them to, I would also say be realistic. Don't try and make everything like pie in the sky because sometimes it's not okay the way that we're treated. Sometimes not everything is gonna be okay. But teach them that it's gonna be hard, but you will have successful moments in life. There will be good moments, it won't be all doom and gloom. And also, definitely every once in a while, parents give yourself a pat on the back. It is not easy going through this process of all the surgeries and a lot of parents, whether their kids are born with a facial difference or not, they're always worried about messing up. I'm not a parent, so I wouldn't fully know, but you are going to mess up at some point. Everybody messes up and there is no book on parenthood. So just, you are gonna make a mistake here or there, and it's totally normal. And also just make sure that your child, or whoever you're watching over, if you're their guardian, let them know that there is somebody there who is always in their corner, and you will always be there for them. That is the most important thing.

- So much wisdom right there, Mary. So knowing what you know now, what is one thing you would tell your younger self?

- Oh, one thing I would tell my younger self, you are going to be more successful than a lot of the people who are not nice to you. That's happened to me. I literally like, randomly have seen them on the internet somehow or like get a notification- and you know this person or I run into them, and on Staten Island, that's where I'm from, and I will talk, you know, how have you been? And it was all worth it because I turned out to be, I turned out to have a lot of good later in life. Is it perfect? No, do I still deal with a lot of the insecurities that I've had since I was a little girl? Yes, do I still go to therapy for it? Yes. But you will meet people who, and it may take a while, you will meet people who you mesh with, who you work well with. You will actually make friends. I know people on the spectrum will think that's impossible. And I'm not saying that's still not hard to make friends. It is. But you will at least have a couple of friends and just because of everything that you've been through, nobody can stop you from what you wanna do. I've seen, 'cause we have a lot more, we've had to grow up at a young age, in some ways, but we have so much bravery, determination, strength, wisdom, and just superpowers that a lot of people do not have, that we can apply to every aspect of our lives and we can come out to be very successful. Like I am in a neuroscience program called BP-Endure. If you go to Hunter College or NYU, you should apply. And I'm the first person that we know of that has autism, and I'm the first person who's been accepted that has a facial difference in this program. So I get to do what I love and I'm making progress for our communities.

- Yeah, I always believe if you do what you love, it feels so good. So who do you see when you look in the mirror today? I know what I see when I'm listening to you, and knowing you, but who do you see when you look in the mirror?

- Sometimes, depends on the day. Sometimes I still see that, sometimes I look at myself and I'm like, what did I look like before the 2020 surgery? I don't remember. Sometimes I am like, I really don't wanna be me today. I just don't because it's hard, especially with people with disabilities, it's hard to be us. So I feel like some days I'm just like, I can't do it today. And other days I'm just like, you're a queen, basically, and we're gonna have a good day.

- Amazing. I will say that I, when I see you, Mary, and I've known you for a long time now, you are, you have so much wisdom and so much poise and so you are putting yourself out there in so many ways and I have so much respect, and I think I was not that person that you are when I was your age. And I think I didn't have that, I didn't have the My Face support in the way that you do, which I guess is also a piece of it. But-

- Yeah.

- Thank you Mary, so much for sharing your story with us, and your thoughts about hiding behind the mask and then revealing who you are. And as I said, I can relate so much to wearing that mask and even creating another persona. And it's only in the last few years that I have begun to reveal more of my true self, my authentic self. And I look forward to seeing where your journey takes you in the future. I am so excited to see where you go and supporting you all along on that journey. So thank you Mary.

- Thank you so much. And I do wanna see where that journey goes, and I think it'll definitely be an interesting road.

- Okay, thank you. So Mary is an inspiration to me and everyone she meets. Everyone has a story, and I'm hopeful that by sharing stories like hers, we can create a kinder world. For more than 70 years, My Face 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 pave the way for better outcomes. To learn more, please visit MyFace.org. If you would like to learn more about the My Face support groups so that you can connect with others in the cranial facial community, please visit MyFace.org/online-groups. Be sure to subscribe to "My Face My Story" 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 "My Face, My Story." Remember, it takes courage to share your story, so be brave and speak out.

- Hi, I'm Stephanie Paul, the executive director of My Face. My Face is a nonprofit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences. We do this through various programs and events, such as the Transforming Lives Educational Webinar series, Races for Faces, The Wonder Project, and the groundbreaking, "My Face, My Story" conversational series. You can learn more about all of these on our website at MyFace.org. If you enjoyed today's program, we hope you'll consider making a donation to help keep programs like this possible, as well as to further the support of the craniofacial community. Thank you.