Finding Courage, Finding Self: A Conversation with David Cohen

myFace, myStory

On this month's myFace, myStory podcast host Dina Zuckerberg is joined by David Cohen, recipient of the 2024 myFace Courage Award. David talks about the dark twists on his journey of hope to acceptance of his life with Pierre Robin Sequence to who he is now. He shares what he thinks should be happening to support children and adults in the craniofacial community.

Dina Zuckerberg: Welcome to myFace, myStory: Voices from the Craniofacial Community with your host, Dina Zuckerberg. Hello and welcome to Dina Zuckerberg: Voices from the Craniofacial Community. I'm Dina Zuckerberg, your host and director of family programs at myFace. Let me tell you a little bit about myself. Like many of us in the community, 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, click 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 a message of inclusivity and empowerment to more people. As we begin National Craniofacial Awareness Month I'm very excited about my guest today, the recipient of this year's myFace Courage Award. David Cohen was born with Stickler's Syndrome. One of the primary symptoms of Stickler is Pierre Robin sequence, a rare genetic disorder that stunts the growth of the lower jaw causing the person difficulties with swallowing and breathing. By the time David was 10 years old, he had undergone more than 10 craniofacial surgeries to correct this issue. David, welcome to myFace, myStory.

David Cohen: Thanks for having me, Dina.

Dina Zuckerberg: Yeah. So David, you've been on a very long what we like to call a journey of hope, which includes not taking no for an answer when the US Navy turned you down for service. So can you share with us, David, your earliest memory of knowing you had Pierre Robin sequence?

David Cohen: My earliest memory is probably, and this is thanks to the capturing of it when we did myFace video, but it was probably my second jaw distraction surgery when I woke up in the hospital.

Dina Zuckerberg: And can you say a little bit about what that was and what that was like?

David Cohen: I was about eight years old, if I remember correctly. It was my second jaw distraction surgery. And at that time in my life, honestly, the biggest challenges were the mental health aspect and the isolation that came with it. I remember being in second grade and always being taken out of class, being sent back to school after the surgeries with jaw distraction devices and people, especially the other kids not understanding what was going on. I wasn't able to play with other kids my age. So the isolation that comes from that was probably the biggest challenge. But I had a loving family and I was lucky enough to have the incredible angelic team of doctors and nurses that I had. So we get through it.

Dina Zuckerberg: So what were some of the challenges you faced in school? Did kids bully you? Did they stare?

David Cohen: Absolutely kids bullied me. At eight years old, people don't understand what compassion is. People don't understand what looking past physical appearances looks like. So having metal devices on your head, it just calls me back to a specific memory when I was in a playground in Central Park and kids kept their distance noticeably saying that I had lasers on my head, looking like an alien. And it's incredibly isolating, especially for a child that young when you don't understand end that it's not your fault and you internalize it. So it creates a bunch of shame messages that become part of your being. And also there's a lot of internal resentment both towards yourself. For me, resentment towards my family and towards, especially my mother as an older kid came up like, why was I born this way? And I wasn't even able to process that and that didn't even come out until I was 24 years old, which is how old I am now. So it really does create, using a building reference, it creates a building on a very, very rotten foundation that it takes a lot of work to clean out and rebuild.

Dina Zuckerberg: So how do you think those experiences shaped your identity as a person?

David Cohen: Well, it's still an emotional journey, and it is very much about resilience and that the challenges that I had as a child have given me some of my best, but also some of my worst qualities. I'll start with the worst, so I can leave the note on a positive one, but I was very emotionally immature and I'm learning now how to properly handle my emotions also back then and until very recently, I felt like I was a burden and I was just work for the people around me. And I am starting to learn that that's not true. We need to accept who we are. We need to accept that our craniofacial differences make us assets, not liabilities, which I'll touch on in a little bit with the military, but we need to realize that it's who we are, and that's nothing to be ashamed of. That's something I'm still working on now.

Dina Zuckerberg: Yeah, I can relate so much to what you're talking about in terms of the resilience and how, I think because of our experience, we had to constantly, I don't know if fight's the right word, but to push ourselves in a way that I think others outside of the community may not have to do in the same way always.

David Cohen: Absolutely.

Dina Zuckerberg: And I think that it is so much more about the emotional. I mean, somehow for me, the surgeries, it was sort of less about the surgeries, but more about the emotional piece, the social emotional piece that we have to contend with, I think in a way that, yeah, others don't.

David Cohen: Surgeries are physical, surgeries are physical pain. They are tangible. They are finite in time, and they pass. When you heal, you stop hurting. It's over. The emotional piece is the untangible, the emotional piece, the incomprehensible, because it's not visible. For the listeners who have seen the video that was aired at the gala where I was presented with the Courage Award, I touch on a piece of self-harm. I started self-harming when I was 10 years old. And the reason why I started self-harming is because I was no stranger to physical pain because of my surgeries. Whereas the emotional pain that we were dealing with, that I was dealing with was uncomfortable. It was strange to me, and I didn't know when it would end. So a lot of people who self-harm, the reason why a lot of people self-harm is because it takes an emotional pain and converts it into a physical one, one that's tangible, one that you have control over. And that was one of the biggest things that I had to kick. And one of the biggest things that was detrimental to my self-esteem was the fact that I was still self-harming. And while it helps deal with the emotional pain, it also reinforces it. So in order to stop, in order to help yourself heal, you first have to let go of those negative patterns that reinforce that negative pain.

Dina Zuckerberg: Right. Yeah, that makes a lot of sense. So how did your family, because I really believe that when you have a child with a craniofacial difference, it does impact the whole family, including the sibling. And I know you have a sister. How do you think it impacted the rest of the family?

David Cohen: So my sister was born when I was six years old. Part of that resentment piece that I touched on earlier, especially if the sibling does not have a craniofacial difference and is born, as I like to a boring normie, it creates that resentment towards your sibling as well. For me, what it looked like was when my sister was born without a craniofacial challenge, to me, when my parents now are paying attention to this seemingly perfect newborn baby, that gave me the message that I only get the attention when I'm sick. I only get the attention when something is wrong with me, because at that point, I wasn't going through surgeries. And then to reinforce that message when I was eight years old and I had my second jaw distraction surgery, the attention went from my sister straight to me because we were doing the video, I was in and out of hospital. So that sort of was the nail in the coffin for that specific shame message. It also created a lot of resentment towards my sister because she, to me, to the six-year-old me, she was the one who took away the attention, the love from my parents. And the reason why it's stronger for people in the craniofacial community is because the attention that we need is so much more because there's a medical aspect to it. So the delta between the attention that you have and the attention that you don't, between, to boil it down into simple terms, sick and healthy is huge. And when you throw a sibling's birth into the mix of that, that is an existential factor that is, for us, makes it very easy to just zero in on that and use that as the cause of that [inaudible 00:12:59]. And in turn, to go back to your question, Dina, in turn, that causes a lot more stress on the family because now there's a innate sibling rivalry that it's not solvable by an existential solution. I mean, my relationship with my sister only started getting better when I left for college at the age of 17, the better half of 17 too, I was almost 18 when that happened. And we have a lot to work on. There's 18 years, or rather 12 years of trauma to work on that, that we need to sort of unbuild and rebuild.

Dina Zuckerberg: Yeah, I think trauma is very real for people especially in the craniofacial community, and it's something I think about often how that impacts so much of your identity. Yeah, so David, I think you appear so confident now. How is that? I mean, let me just preface that also by saying that I didn't have, in my opinion, nearly the confidence that you have at your age. So how do you think that is or why that is?

David Cohen: So the military definitely increased my level of confidence as sort of a trial by fire. My first confidence lesson that I failed miserably was when my first day at work in front my division of sailors, I was a division officer in the Navy, so I was an officer in charge of 16 sailors. And the first confidence lesson was when I was standing right in front of my division, all people older than me and everyone had more naval experience than I did, but I was supposed to be in charge of them. And that shakes a person. You're being asked to tell someone what to do when you have absolutely no idea what the job entails. So that's what I meant by trial by fire, you have to learn on the job, learn as you go, and you also have to have that self-respect to be able to admit, respect for yourself, but also respect for the people you are interacting with, to be honest and to say, I don't know, please teach me.

Dina Zuckerberg: Can you take us back, David, to when you wanted to join the Navy and what happened?

David Cohen: I decide that I want to join the Navy, this is a little known fact, but I guess it will be much better known now, I did not originally want to join the US Armed forces. When I was in high school I wanted to join the IDF, the Israeli Defense Force, like my father and my grandmother before him. And my father, because I was graduating at the age of 17, I needed my dad's signature to be able to sign up for the IDF before my 18th birthday, he wouldn't sign. So in a rebellious move I went to a US Armed Forces recruiting office and said, "I would never join the US Armed forces, but just to say that I tried all my options, I'm going to go and see what they have to say." And I came out with an ROTC package. And I started doing ROTC. When I joined college, I went to George Washington University, which had one of the best Naval ROTC units in the country. And I was awarded a scholarship, I was awarded a contract.

Dina Zuckerberg: So how did you go about getting, because I know you dealt with rejection and they weren't so eager to take you so quickly and you had to get people to say that you could serve in the US Army. Can you share a little bit more about that?

David Cohen: Yeah, because of my craniofacial difference, part of the screening process is medical. So you have to give up all of your medical history, and for me there was a lot, as I'm sure you can imagine, and they got daunted. And they started diagnosing me with random, completely unrelated stuff. Most notably I think they diagnosed me with gastrointestinal disorder, reflux disorder, which I'd never had ever in my life. And so I had to start getting a bunch of letters from doctors, Dr. Flores saved my bacon when it came to this because he wrote me letters basically saying there is no reason why he shouldn't be able to serve and Dr. Flores at the time being one of the most notable experts in this field, he was taken as a subject matter expert and I was allowed through. But yeah, I mean, it's rough. You're born with something that you have no control over, and you're born with something that you didn't choose. It's not like mom went to a baby vending machine and plugged in a Stickler syndrome, cleft palate, all of that stuff. We have no control over this, our parents have no control over this, but something that you want to do with all your heart and something that you feel like you're made to do. I committed to the US Armed forces with my entire being, and I still do. I mean, I'm a veteran. I'm proud of my service, and I'm proud to have served alongside so many wonderful men and women, brave, our nation's bravest human beings. And it's an honor. But when you feel like you're made to do something and something that you have no control over stops you from doing that, it's heartbreaking.

Dina Zuckerberg: Yeah. I thank you, David, for your service. So I was just thinking as you were talking that what's I think really hard is to dispel, if I'm saying this right, the perceptions that people have about people in the craniofacial community, whether it's you're not smart, you're not capable, I think that. So how do you think we can, or society can work to change that? I think education is certainly a piece of it, but I'd be curious to hear what you think.

David Cohen: So the biggest one that I've noticed, especially in my interactions with other beautiful capable members of our community is that we look different. And that is the biggest, for craniofacial challenges, it's not as physically hidden as say, autism or another learning disability. So first of all, as you can see, I am not visibly obviously a member of our community, but I have a little bit of a conundrum where to, as I like to call boring normies, I don't look normal enough, but to members of the craniofacial community, I look normal. And so I should be an example to the rest of the world that you never really know. And it's important to be sensitive to this community, just like we're sensitive to people with learning disabilities. The craniofacial community, we come with challenges of our own and we don't need the rest of the world to pile onto that. And how do we combat it, I completely agree with your point about education. I also think that members of our community need to be comfortable taking a stance for themselves. And when we take a stance for ourselves, especially because many members of our community, especially those who are born with craniofacial difference like you and me, the hardest part is when we're dealing with peers, especially at a younger age. So our schools need to support members of the craniofacial community unquestionably.

Dina Zuckerberg: I agree.

David Cohen: There needs to be undying support from our school administrations. I'm incredibly lucky, I went to a Jewish day school and the value base of that school was zero bullying. It still happened. One million percent I was bullied relentlessly, but my school was supportive. They did conflict resolution. The whole nine. My school, without having not gone to the school that I went to, my experience would've been 10 times worse. But I would be remiss to say that all schools are supportive as mine, but they should be. And then in terms of the rest of the world for adults, we need legislation that protects us as a community, just like it protects any other minority community or any other member of the, so-called disabled. I hate the word disabled, but that's how we refer to it in our society. But it is a challenge that we face that takes a little bit longer to get through and takes a little bit more work on our part and on our family's part, but that is no reason to believe that we can't do exactly everything that everyone else can do, sometimes even better.

Dina Zuckerberg: I agree. And I think that sometimes I think we need to educate adults more than we do kids sometimes.

David Cohen: Absolutely.

Dina Zuckerberg: And I also believe that having a craniofacial difference needs to be a part of the conversation. I feel like it is not currently part of the conversation-

David Cohen: Oh, a million percent.

Dina Zuckerberg: ... especially around disability, although I know you don't like that, but around all of that, we are not part of the conversation at this very moment. I think we are moving in that direction because there are so many advocates like you and me and others that I think are bringing it more to the forefront, but I think there's a lot more work to be done.

David Cohen: Oh, absolutely. And something that you said, Dina really resonated with me. Kids need to be educated, but there's only so much that a child can actually internalize. How is a child educated? How is a child taught to be compassionate? By the behavior of their parents, by the behavior of the teachers, by the people, by the adults around them who they decide to model after. So if we can educate parents and teachers, that's how we educate our children. We don't educate our children by sitting them down, "This is what craniofacial difference looks like." We need to be nice to this person because [inaudible 00:25:52] even didn't even though they look different from us. That's not how it's supposed to be. In fact, honestly, in some situations it would actually isolate us even more because we become that person who we have to be nice to because they're different. We don't want that. We are the same as everyone else, we just have different... Our challenges just come in different boxes. That's the only difference. Our challenges make us assets, not liability.

Dina Zuckerberg: Right. I love that. I love that.

David Cohen: Because of my craniofacial difference, I'm a more compassionate person, I'm a more resilient person, and I'm more measured in my thinking than the average 21-year-old was graduating college and joining the service. So I was able to use those lessons to be a better naval officer and serve my country in a better way.

Dina Zuckerberg: Yeah, I feel the same way. Yeah.

David Cohen: In no way was it a challenge. In no way, sorry, it challenged me, in no way did it make me a liability.

Dina Zuckerberg: Right, agreed. I feel the same way. I feel like it gave me all those qualities that you just talked about in a way that, because I think because of what I went through, it made me a more compassionate, kind, more resilient for sure individual because of my experiences.

David Cohen: You are definitely a force to be reckoned with Dina.

Dina Zuckerberg: Thank you. Thank you. So to our audience, if you are enjoying this conversation with David Cohen, there are more myFace, myStory episodes coming to you to enjoy. Please be sure to subscribe to our YouTube and Apple podcast channels and sign up for our mailing list at myface.org/mystory. You gave an amazing speech at the myFace Gala, in my opinion, and you also performed at the gala. And one of my favorite moments, David, was witnessing you interacting with one of the kids and really being a mentor to one of these kids. When I was hanging out with you before the gala started and just watching that connection, what was that like for you?

David Cohen: I'm assuming you're talking about Joseph?

Dina Zuckerberg: Yes.

David Cohen: Awesome. Yeah, first of all, Joseph, if you're watching this or either of his parents are watching this, Joseph is a perfect example of the kind, warm-hearted person that represents who our community is. And being able to honor that and being able to foster that and nurture that kindness and showing that his kindness isn't shown as weakness, and that he's not going to be treated differently or be pitied for his craniofacial difference, I was able to give him what I wish I had had from a member of our community. And I'm not saying that my community failed me, not at all. The myFace community is the reason I am still standing and I was able to accomplish what I was. But if we had a more tightly-knit interactive community when I was a child, I feel like I would've been a lot better off than I was, and I would've had a lot less independent individual work to do growing up. But yeah, it's always heartwarming to see a little kid just be able to look past his own challenges and say, "I'm not going to let this get in my way," and just have a grand old time. It was amazing.

Dina Zuckerberg: Yeah, it really was. It was an amazing evening. And what you just said about, I feel like I didn't have that tight-knit community for sure when I was growing up and I think that was the basis for why I do the work that I do today, because I want the children today to have the things that I didn't have when I was growing up, that support the resources, in the same way. I mean, I had some of it for sure. So what advice do you have for others struggling to get into a career they choose because of their difference?

David Cohen: Short and sweet, and I'll elaborate on this, don't take no for an answer. You are an asset, not a liability. One million percent. I mean, by letting your challenges get in the way, you are doing yourself a disservice and you're doing the world a disservice because you're not sharing your own greatness with the world. You're not using your experience and your tenacity to make the world a better place. I can rattle off a few names of examples of what happens when we allow our challenges to better the world instead of keep us back. Naomi, a friend of mine who's a makeup artist, she does amazing work and she supports our community every day by doing so. Recently this year we have a finalist in Miss New Jersey as a member of our community, Aliyah. Seeing what can happen when we allow our challenges to propel us as opposed to hold us back, it's a beautiful, beautiful thing. Austin, who's a craniofacially different artist, he allows his "disability", I use that word because one of my favorite songs of his is Disabled, he allows his craniofacial difference to come out in his art and in turn help other people, other members of his community. And I am beyond honored and privileged to call myself a community member alongside them. So use these people as inspiration. Don't let your difference hold you back, and in turn deprive the world of your own greatness.

Dina Zuckerberg: David, I love that. It's perfect advice. So now, what advice do you have for parents who have just learned that their child has a facial difference?

David Cohen: If I could say just model my mother, I would. I was so privileged to have a mother who was able to find a balance between being there to support me and turning over control to the medical experts and the psychological experts. My mother, I can't speak for her especially because I'm not a parent, but I can only imagine how difficult it is to turn control over to professionals and give them control over your child and your child's wellbeing. As a parent, I can only imagine that's incredibly difficult to do. But my mom was able to do that, and while doing that, she never stopped being by my side, being there to support me. She was at every doctor's appointment, every myFace shoot. She was a constant in my life, and she was a constant of compassion and of protection, which goes into the other piece. So number one, please don't for one second think that admitting that you can't do this on your own is admitting that you're a bad parent. There are people who've trained for years on how to help craniofacial difference and allow those professionals who have that training to make our lives better, to save our lives, to minimize the long-lasting damage. On the second part, which is being there for your child, the most important part that my mother did for me was she was relentless in her defense of me, no matter how crazy she came off, no matter how unreasonable people told her she was being, my mother never, ever let up when it came to defending me against bullies, against schools. She was a force of nature. And having someone like my mother and seeing my mother go to bat for me and always being there for me, reinforced my self-worth and reinforced my knowledge that I am loved. I am love, I am loved, and I'm lovable. So please relinquish control to the professionals, but also go to bat for your kids. It doesn't foster weakness, it just shows them that they're worth it.

Dina Zuckerberg: Yeah, I have a parent group, and when the parents, the moms, I tell them because they worry about their kids and they worry that they're doing a good job and I watch them and I just think... I tell them, "You are such incredible advocates for your children and that your children will remember that always." And just what you were just saying and what I say all the time is that the support that my mom gave me, I still remember to this day when she sat in the hospital after I had, recovering from surgeries and everything that she did for me, I still remember that to this day. And so I tell them that because I think they worry so much that they can't quite see the future and they're in the now, in the moment. So yeah. So why do you think a community like myFace is so important?

David Cohen: Because we're niche. We're very unique. We are not a one size fits all. But we're also very unique as a community, and there aren't really resources out there in the normal infrastructure of disabled resources. So because of that, myFace is the one stop shop and needs to be the one stop shop. Therefore, because it is one community, I think the fact that we don't have separate communities for [inaudible 00:38:07] and all of the other craniofacial differences, it makes us more unified. So being able to have the myFace community be for the entire craniofacial community, it is so incredibly eye-opening and strengthening. That's on the internal piece, on the external piece, without the myFace community, there's no advocacy. And we need the MyFace community to advocate for us in Congress for legislation, but as well as a unified front to educate the world at large, society at large to what craniofacial difference is and why it should be honored and respected and not shied away from.

Dina Zuckerberg: Right. And also for people to understand that having a craniofacial difference is just one piece of us that we're so much, I think was so much more than our difference.

David Cohen: Absolutely, one million percent. And that's what the education piece is all about. It's all about showing, like I said, we come in all different shapes and sizes, but it doesn't define us. We're not defined by what we have, we're defined by what we do, and we should be able to take our challenges and let them impact our actions for the better, not stifle who we are and what we do.

Dina Zuckerberg: So David, what's next for you? What's on the horizon?

David Cohen: Honestly, I have no idea in terms of my day job, however, I'm going to be a avid advocate for the myFace community and the Craniofacial community at large. I have made such incredible friends, a few of whom I've rattled their names off in the session of this podcast. But yeah, I'm going to commit my life to making sure that our community is well represented and well-supported.

Dina Zuckerberg: And I look forward to working with you, David, on that because it's something I too am very passionate about. So last question, who do you see when you look in the mirror today?

David Cohen: I still see a little bit of a cracked mirror, and I'm trying to repair that. But who do I see now? I see someone who is able to overcome a challenge and prove to a highly bureaucratic organization that sometimes the rules in place aren't the best ones to follow. Sometimes we need to rewrite the rulebook a little bit. I'm not saying that the Navy's rules aren't meaningful and they're not there for a good reason, they are. They're there to make sure that people who serve our country in the most stressful situations can handle those stressful situations. But I'm here to show that I see in myself someone who is able to take the rule book and push past it for the better. I see someone who loves to help members of his community and who wants to give back. But I also, like I said earlier, see someone who has a lot more work to do. Our journey of hope is never ending, and it's important that we as a community support each other's journey of hope.

Dina Zuckerberg: I always say we're always on that journey. Somehow, I think it never quite ends, but it is a journey from the day we're born until we're older and hopefully wiser. So David, when you spoke at the myFace Gala, this stood out for me when you said, "We are a beautiful and able community, and that's what gives us strength. That's what gives us courage. Together as a community, we are unstoppable." And David, I think you are truly unstoppable, and I can't wait to see what the future has in store for you.

David Cohen: Thank you, Dina.

Dina Zuckerberg: Thank you. Thank you for sharing your journey with us. David's joy is an inspiration to me. Everyone has a story, and I'm hopeful that by sharing stories like these, we can create a kinder world. This podcast is just one of the many programs developed at myFace, a nonprofit organization that has been supporting the life journeys of individuals with craniofacial differences for 73 years. From the myFace Center at NYU Langone Health, to online support groups, to the myFace Wonder Project, created to increase visibility, awareness, understanding, and kindness among school-aged children and delivering new mothers of babies with cleft lip and palate special care kits. myFace believes every individual has value and the world is stronger when every person, no matter how they look, is valued, respected, included, and empowered to achieve their greatest potential. Have a great day, and remember, it takes courage to share your story. So be brave and send me your thoughts, go to Www.myface.org. And be sure to subscribe to myFace, myStory on your favorite podcast app and on YouTube to get notified of our next episode.